Not much to report skin-wise, as things are about the same. My skin is relatively calm and not giving me too much trouble at all. It was doing quite well due to the sunny weather, but unfortunately it is raining here in the UK again, and we have likely had our allocation of sunshine for the year!
I have been working on an exciting project for itsan. It is all a bit "hush-hush" at the moment, but the idea is to write a storybook for kids that is directed at families coping with steroid withdrawal. From experience, I know how hard it is going through this skin hell and it must be really hard for little children, who don't really understand what is going on.
With this in mind, I spent the best part of today writing a kids story (They say everyone has at least one book in them). I have sent a draft copy to a couple of itsan board members to see what they think, but I really hope that something comes of it. I'm not saying any more about the story until I get some feedback, as I may end up re-writing the whole thing if they don't like it. Itsan has had lots of children who have come through the withdrawal process and are now 100% healed, and I would love them to do the illustrations for the book if it ends up being published.
Watch this space......
Thursday, 31 May 2012
Wednesday, 30 May 2012
A-Z of Corticosteroid Withdrawal: Pimples and Pustules
P is for Pimples, Pustules and Papules
I am quite glad that I have not actually experienced this symptom myself during steroid withdrawal, but from reading the itsan forum and the many articles written by dermatologists on the subject, it would seem that various types of spots on the skin are very common upon cessation of steroid creams.
Sometimes an individual can wake up to find their whole face covered in tiny red spots. This is obviously very distressing and frightening, as well as having the effect of making the person feel very self conscious.
Pustules can be a sign of folliculitis, which is an infection that occurs sometimes in people with TSW. Any kind of infection should be treated by a medical practitioner as soon as possible.
Here are some of the comments that people on the itsan forum have made on this subject:
"folliculitis is a fairly common sign and symptom of topical
steroid withdrawal/addiction. It consists of pustules, which are like
pimples, and a lot of us get those. It can be superficial (non-
infected) or deep where it would cause a boil from an infection. You
can see the difference in the two. If it looks like pimples, and they
go away over a few days, I wouldn't worry about it; only take caution
if it looks infected and causes a furuncle (boil), in that case
consider antibiotics definitely. Our normal flora is pretty imbalanced
and upset from the corticosteroids we used, so it can be easy for an
infection to occur; I would say the most important risk factor for
infection in us sufferers is that our skin protective barrier is
diminished. "
"J woke up spotty AGAIN grrrr! Last night he had one little spot on his ear, and woke up this morning with the upper part of his face spotty, so off to the docs we trot this morning, and apparently he has folliculitus (that's a new one for us!) "
"About 4 months ago, I started getting these weepy bumps that were tender or itchy. They looked like pimples to a degree, but had an entirely different nature about them than I was used to (and goodness knows I had years of experience with acne). They couldn't be popped and they seemed to spread in clusters over my cheeks and chin."
So here we have yet another unsightly symptom of topical steroid withdrawal. Pimples can be caused by staph bacteria on the skin, which can get out of control, so great care is needed to keep the skin clean during TSW to keep the bacteria levels down. Luckily, the immune system should be better equipped to deal with infection as it no longer has steroids suppressing it, but severe infections may require antibiotics.
I am quite glad that I have not actually experienced this symptom myself during steroid withdrawal, but from reading the itsan forum and the many articles written by dermatologists on the subject, it would seem that various types of spots on the skin are very common upon cessation of steroid creams.
Sometimes an individual can wake up to find their whole face covered in tiny red spots. This is obviously very distressing and frightening, as well as having the effect of making the person feel very self conscious.
Pustules can be a sign of folliculitis, which is an infection that occurs sometimes in people with TSW. Any kind of infection should be treated by a medical practitioner as soon as possible.
Here are some of the comments that people on the itsan forum have made on this subject:
"folliculitis is a fairly common sign and symptom of topical
steroid withdrawal/addiction. It consists of pustules, which are like
pimples, and a lot of us get those. It can be superficial (non-
infected) or deep where it would cause a boil from an infection. You
can see the difference in the two. If it looks like pimples, and they
go away over a few days, I wouldn't worry about it; only take caution
if it looks infected and causes a furuncle (boil), in that case
consider antibiotics definitely. Our normal flora is pretty imbalanced
and upset from the corticosteroids we used, so it can be easy for an
infection to occur; I would say the most important risk factor for
infection in us sufferers is that our skin protective barrier is
diminished. "
"J woke up spotty AGAIN grrrr! Last night he had one little spot on his ear, and woke up this morning with the upper part of his face spotty, so off to the docs we trot this morning, and apparently he has folliculitus (that's a new one for us!) "
"About 4 months ago, I started getting these weepy bumps that were tender or itchy. They looked like pimples to a degree, but had an entirely different nature about them than I was used to (and goodness knows I had years of experience with acne). They couldn't be popped and they seemed to spread in clusters over my cheeks and chin."
So here we have yet another unsightly symptom of topical steroid withdrawal. Pimples can be caused by staph bacteria on the skin, which can get out of control, so great care is needed to keep the skin clean during TSW to keep the bacteria levels down. Luckily, the immune system should be better equipped to deal with infection as it no longer has steroids suppressing it, but severe infections may require antibiotics.
Tuesday, 29 May 2012
A-Z of Corticosteroid Withdrawal: Oozing
O is for Oozing
Oozing skin is by far one of the most distressing symptoms of topical steroid withdrawal. It feels so unpleasant when the skin is wet and sore. The ooze is runny and smelly and clothing and bedding have to be changed often.
Dr Rapaport, who has extensively studied the withdrawal process, believes that the oozing, which is often accompanied by edema, is caused by dilated blood vessels, which cause the skin cells to leak fluid. Steroid creams suppress the blood vessels, so when we stop using them, they dilate, due to the buildup of nitric oxide, causing the skin to blister and ooze fluid. Alternative practitioners treating this condition believe that the oozing is a way for the body to eliminate waste that cannot be processed efficiently by the kidneys, so there are lots of different views on why we ooze.
Charting my own experiences with oozing, I have noticed three distinct types of oozing. Patients undergoing steroid withdrawal may experience one or more of these types, although some are very lucky and don't have any oozing at all, as symptoms vary depending on duration and potency of steroid use:
1: Clear ooze. This clear ooze (serous exudate) resembles sticky sweat. It is the virtually same consistency as sweat, and affects large areas of skin. When this ooze appears in areas where the skin cannot breathe, such as under tight clothing, or under a bra strap, the skin can start to smell really bad. I am not sure whether this is due to the effect of bacteria on the ooze, or whether it is the ooze itself, although I would imagine it is bacterial.
Clear ooze tends to form at night, when I am lying in bed. It forms on my neck and in my skin creases when I lie on my side. I also get it behind my ears. When the oozing skin comes into contact with the air, the ooze dries up very quickly, leaving the skin tight, with a powdery layer on top. If I rub or scratch the affected areas, which are usually very itchy, the oozing starts again and can seep through clothing and bedding. I have to change my pillowcase every day because my neck oozes fluid in the night. I also have oozing on my chest, so have to stuff my bra with tissue at night to mop it up. I have found that a silk scarf or pillowcase wrapped around the neck can help mop up the ooze, or if the condition is more severe, a towel can help. Dr Rapaport recommends domeboro, or burrows solution applied as a compress on weeping areas, although this product is not readily available in the UK.
This is a picture of the wet wound on my leg, which illustrates what I am talking about. The skin has been like this since January. This is an older photo and although I still have the wound, it looks much better these days.
Oozing is a nasty and persistent side effect of topical steroid withdrawal, which is extremely distressing and can persist for many months. it is important to find a way of coping with it and dealing with it the best way you can. Healed veterans of TSW report that the oozing does go away with time.
Oozing skin is by far one of the most distressing symptoms of topical steroid withdrawal. It feels so unpleasant when the skin is wet and sore. The ooze is runny and smelly and clothing and bedding have to be changed often.
Dr Rapaport, who has extensively studied the withdrawal process, believes that the oozing, which is often accompanied by edema, is caused by dilated blood vessels, which cause the skin cells to leak fluid. Steroid creams suppress the blood vessels, so when we stop using them, they dilate, due to the buildup of nitric oxide, causing the skin to blister and ooze fluid. Alternative practitioners treating this condition believe that the oozing is a way for the body to eliminate waste that cannot be processed efficiently by the kidneys, so there are lots of different views on why we ooze.
Charting my own experiences with oozing, I have noticed three distinct types of oozing. Patients undergoing steroid withdrawal may experience one or more of these types, although some are very lucky and don't have any oozing at all, as symptoms vary depending on duration and potency of steroid use:
1: Clear ooze. This clear ooze (serous exudate) resembles sticky sweat. It is the virtually same consistency as sweat, and affects large areas of skin. When this ooze appears in areas where the skin cannot breathe, such as under tight clothing, or under a bra strap, the skin can start to smell really bad. I am not sure whether this is due to the effect of bacteria on the ooze, or whether it is the ooze itself, although I would imagine it is bacterial.
Clear ooze tends to form at night, when I am lying in bed. It forms on my neck and in my skin creases when I lie on my side. I also get it behind my ears. When the oozing skin comes into contact with the air, the ooze dries up very quickly, leaving the skin tight, with a powdery layer on top. If I rub or scratch the affected areas, which are usually very itchy, the oozing starts again and can seep through clothing and bedding. I have to change my pillowcase every day because my neck oozes fluid in the night. I also have oozing on my chest, so have to stuff my bra with tissue at night to mop it up. I have found that a silk scarf or pillowcase wrapped around the neck can help mop up the ooze, or if the condition is more severe, a towel can help. Dr Rapaport recommends domeboro, or burrows solution applied as a compress on weeping areas, although this product is not readily available in the UK.
This is a photo of my skin very early in withdrawals, when my neck and chest had been oozing a lot of clear fluid and then dried to give a "plastic" appearance. Thankfully, it looks nothing like this anymore!
2: Vesiculation. This is what I call the "nasty ooze" and is a lot more persistent and problematic that the clear ooze. Wet wounds and blisters appear on the skin, which do not dry up. They commonly appear on the legs or knuckles. The wounds ooze a thick yellow fluid, which can continue for many months. A papery scab sometimes forms, but quickly falls off or is rubbed off, revealing wet skin underneath. Although the ooze is yellow, Dr Rapaport says that the skin is rarely infected, although most doctors would see the yellow ooze and presume that there is an infection present.
The skin looks like a volcano, ready to ooze magma. The best way to treat this type of oozing is by using the moist wound method. I like to smear a cotton wool pad with shea butter, before fixing it over the wound with microporous tape. The moisture encourages the skin to form new cells and heal up. You can also use Vaseline or hydrocolloid dressings for the same effect, although I didn't find the hydrocolloid gel to be very good on my skin.
3: Blisters on the hands. These tiny blisters can form on the palms of the hands and soles of the feet. This is sometimes known as dyshidrotic or pompholyx eczema, although in my case, it was not a true eczema, but a direct result of the steroid withdrawal. The tiny blisters ooze a clear fluid, which can easily get infected, as the hands are in constant use. I try to keep my hands as clean as possible, and moisturise often. The blisters are very itchy and uncomfortable.
Here are some of the comments that members of the itsan forum have made about oozing skin:
"I have two continually weeping/oozing open wounds on my feet/ankles and another, on one of my knuckles that I have had for about 3 months now (I am in my 8th month of withdrawal). I have tried soaks, manuka honey, left to the open air, bandaged up (wet wound treatment) but nothing has worked. "
"It's amazing how just two days ago I had ooze dripping down my arms and today it's settled. The changes are so extreme and the emotions are on the same roller coaster ride."
" I mostly get the clear ooze
now - when I scratch or behind my knees when the skin rubs, like you said -
but mine can take several hours to dry up (from scratching) and I find that
the clear ooze is not smelly, only the yellow ooze. I rarely get the yellow
ooze now, only around my ankles occasionally, but in the early weeks I got
it around my neck a lot and boy, did it stink!"
now - when I scratch or behind my knees when the skin rubs, like you said -
but mine can take several hours to dry up (from scratching) and I find that
the clear ooze is not smelly, only the yellow ooze. I rarely get the yellow
ooze now, only around my ankles occasionally, but in the early weeks I got
it around my neck a lot and boy, did it stink!"
Oozing is a nasty and persistent side effect of topical steroid withdrawal, which is extremely distressing and can persist for many months. it is important to find a way of coping with it and dealing with it the best way you can. Healed veterans of TSW report that the oozing does go away with time.
Monday, 28 May 2012
Day 190: Photos
I thought I would post a few of my improvement photos today to cheer everyone up and give hope to all the newbies who are just in the first months of steroid withdrawal and are wondering if things will get better.
You can see from the photo that my skin is slowly getting paler and returning to its normal colour. Like I mentioned a few days ago, I don't look much different to the other sunburned parents at the school gate and certainly feel less self conscious. It feels like things are on the right track for me and the sun is definitely helping my skin. The texture of the skin is a lot better too, it is not so flaky or oozy anymore and feels smoother to the touch. It doesn't look any different to when I was using the steroids. If you compare this photo with previous ones, you can see that my chin is a lot better than before, as this was a problem area for me.
I'm SO happy about my arm. It looks normal! A few months ago, I couldn't even bend my elbow or stretch my arm, as the skin was so tight. Now the skin is normal on the back of my arm and almost healed on the inside of my arm. I think that this is the best improved area.
My legs are also pretty much healed. The skin on my feet is normal. I still have slight issues with vesiculation on the inside of my calf, but I am now treating it with shea butter and it is slowly improving. It is nice to have some normal bits again! I remember a few months ago, when my legs were so bad that it was really painful top walk, as the flexures behind my knees were all crusted up. Things are a lot better now.
It is so lovely to be able to post pictures like these. they make such a refreshing change to the scabby ones I posted previously!
I still have a long way to go before I am 100% healed, and realistically, I know I will probably flare a few more times yet, but these photos prove that there is life after steroids! I hit a milestone this morning, because for the first time in 6 months, I was able to take the kids to school in the morning. Since withdrawals started, I have felt so ill in the mornings, that my husband takes them to school and I fetch them in the afternoon. But this morning, I felt so good that I was able to go. I'm clawing back my life bit by bit and it feels great.
When I first quit the steroid creams, I wondered if I would really improve. But I also knew that staying on the creams was not an option, as my skin wasn't responding to them anymore. Quitting has been hard and at points I thought I would break, both physically and emotionally, but now I am coming out of the tunnel and into the light again.
It is so lovely to be able to post pictures like these. they make such a refreshing change to the scabby ones I posted previously!
I still have a long way to go before I am 100% healed, and realistically, I know I will probably flare a few more times yet, but these photos prove that there is life after steroids! I hit a milestone this morning, because for the first time in 6 months, I was able to take the kids to school in the morning. Since withdrawals started, I have felt so ill in the mornings, that my husband takes them to school and I fetch them in the afternoon. But this morning, I felt so good that I was able to go. I'm clawing back my life bit by bit and it feels great.
When I first quit the steroid creams, I wondered if I would really improve. But I also knew that staying on the creams was not an option, as my skin wasn't responding to them anymore. Quitting has been hard and at points I thought I would break, both physically and emotionally, but now I am coming out of the tunnel and into the light again.
Sunday, 27 May 2012
Day 189 Hydrocoloidal Gel Review
I'm looking forward to posting some improvement photos on here when I get the time.
My skin is looking a lot better, especially my arms and legs and the skin is extremely smooth and soft.
The only slight drawback I had this morning was the return of the "slapped cheek" appearance on the right side of my face, as I had been lying on that side and the sweat had caused the skin to flare and ooze. This is the only bad part on my whole body though.
I have given up on the hydrocoloidal gel as a cure for my wet wounds. It caused the skin to go very dry and cracked. When I wore it under a dressing as suggested, the gel dried up and it was hard to peel off the dressing. I think vaseline of 50/50 liquid and WSP is a much better moist wound healing product under dressings as it does not dry up.. The wounds are quite cracked, so I am putting shea butter on them during the daytime in the hope that it will keep the area moist and prevent the wounds from from drying up.
My skin is looking a lot better, especially my arms and legs and the skin is extremely smooth and soft.
The only slight drawback I had this morning was the return of the "slapped cheek" appearance on the right side of my face, as I had been lying on that side and the sweat had caused the skin to flare and ooze. This is the only bad part on my whole body though.
I have given up on the hydrocoloidal gel as a cure for my wet wounds. It caused the skin to go very dry and cracked. When I wore it under a dressing as suggested, the gel dried up and it was hard to peel off the dressing. I think vaseline of 50/50 liquid and WSP is a much better moist wound healing product under dressings as it does not dry up.. The wounds are quite cracked, so I am putting shea butter on them during the daytime in the hope that it will keep the area moist and prevent the wounds from from drying up.
Friday, 25 May 2012
Day 187 The Sun is Helping
The sun is still shining here in the UK and it is doing my skin a lot of good!
I'm managing to get out and exercise more. I had an enjoyable morning with my mom and dad when we had a drive out and visited a local wildlife spot followed by a nice cool drink in the garden centre cafe. Then it was back home in time to pop into school and see my daughter get a certificate in assembly.
All in all what you would call a NORMAL DAY.
Actually, when it came to fetching the kids from school, I could see all the other moms standing at the school gate, slightly sunburned from the heatwave (we are not used to it here!) and I realised that a lot of them actually had redder arms, necks and faces than me! The sun is a great leveller and I certainly don't feel so self conscious, as everyone has red skin in this weather!
So for all those reading this blog who are at the start of withdrawals, with blotchy, burning skin, take heart.
Life can return to normal!
I'm managing to get out and exercise more. I had an enjoyable morning with my mom and dad when we had a drive out and visited a local wildlife spot followed by a nice cool drink in the garden centre cafe. Then it was back home in time to pop into school and see my daughter get a certificate in assembly.
All in all what you would call a NORMAL DAY.
Actually, when it came to fetching the kids from school, I could see all the other moms standing at the school gate, slightly sunburned from the heatwave (we are not used to it here!) and I realised that a lot of them actually had redder arms, necks and faces than me! The sun is a great leveller and I certainly don't feel so self conscious, as everyone has red skin in this weather!
So for all those reading this blog who are at the start of withdrawals, with blotchy, burning skin, take heart.
Life can return to normal!
Thursday, 24 May 2012
Day 186 Sunlight
The weather has completely changed here in the UK and instead of those long, grey drizzly days of late, we have been experiencing a bit of a heatwave.
This means I am finally able to get some sun on my skin.
Dr Rapaport and Dr Fukaya both extol the virtues of sunlight for steroid damaged skin, although Dr Rapaport suggests that the patient waits until the initial severe symptoms of TSW have gone. Now I am six months into withdrawal, I am hoping I have enough healing time under my belt to benefit from a little daily sun exposure.
Yesterday I did the school run with my arms uncovered and this morning, my arms look better than they have done in a long time, especially the backs of my arms, which have nice, smooth skin. The only place my arms still need to recover is on the inner part between my elbow and wrist. That area is slightly dry, but it is constantly improving.
The skin on my face also looks calmer. It is slightly blotchy, but looks more like mild sunburn than eczema.
I am also trying a new product for the wet wounds on my legs. I was shopping in the supermarket and saw a tube of hydrocolloid gel, which is supposed to be good for burns and grazes. I put some on under a dressing last night and the wound looks a bit better today. I'm hoping it will heal, as it has been there for five months now. I will report my progress.
This means I am finally able to get some sun on my skin.
Dr Rapaport and Dr Fukaya both extol the virtues of sunlight for steroid damaged skin, although Dr Rapaport suggests that the patient waits until the initial severe symptoms of TSW have gone. Now I am six months into withdrawal, I am hoping I have enough healing time under my belt to benefit from a little daily sun exposure.
Yesterday I did the school run with my arms uncovered and this morning, my arms look better than they have done in a long time, especially the backs of my arms, which have nice, smooth skin. The only place my arms still need to recover is on the inner part between my elbow and wrist. That area is slightly dry, but it is constantly improving.
The skin on my face also looks calmer. It is slightly blotchy, but looks more like mild sunburn than eczema.
I am also trying a new product for the wet wounds on my legs. I was shopping in the supermarket and saw a tube of hydrocolloid gel, which is supposed to be good for burns and grazes. I put some on under a dressing last night and the wound looks a bit better today. I'm hoping it will heal, as it has been there for five months now. I will report my progress.
Wednesday, 23 May 2012
A-Z of Corticosteroid Withdrawal: Nitric Oxide
I cannot talk about steroid withdrawal without mentioning Nitric Oxide. Most of the symptoms that we experience when we stop using steroid creams are a direct result of the effect of Nitric Oxide on our blood vessels.
Nitric Oxide (chemical symbol NO) is a potent vasodilator, meaning that it dilates, or expands the blood vessels, increasing blood flow. Therefore, Nitric Oxide has many applications in medicine. When angina patients are given nitroglycerin, the medication converts to nitric oxide in the body and dilates the blood vessels. Similarly, Viagra medication works in a similar way by increasing blood flow and dilating the blood vessels.
Dr Marvin Rapaport MD, is a dermatologist who has worked with, and cured, many patients addicted to steroid creams. During his research he found that patients suffering from steroid rebound had abnormally high concentrations of Nitric Oxide in the blood. This was completely different to the results from patients with regular eczema. It is believed that the steroid creams artificially suppress the blood vessels, which is why the skin looks less red when you apply the creams. However, once the steroid cream is stopped, the blood vessels are free to dilate again and the body produces excess Nitric Oxide. This is why we get "red skin syndrome", the red skin being caused by the dilation of blood vessels under the skin. This can be easily illustrated by pressing down hard on the skin. The skin momentarily turns white because the blood vessels are suppressed, just like they are when steroid creams are applied.
Dr Rapaport found that these Nitric oxide levels remained high in patients for many months, and in some cases years, before they finally healed. Once the NO levels were back to normal, the skin returned to its previous, eczema-free state. Dr Rapaport is interested in finding a Nitric Oxide antagonist that could possibly reduce the NO levels quicker in steroid addicted patients and decrease the length of time it takes to recover.
In my own research, I found evidence that dandelion is a natural NO antagonist. Researchers found that the dandelion flower and root can suppress NO levels in the blood. I drink a few cups of dandelion tea every day, but I'm not sure how effective it is!
Most of the distressing symptoms, such as the burning, erythema, oozing and skin discolouration of TSW can be attributed to high NO levels in the body. It is simply a case of waiting it out until the levels return to normal. If steroids have been used for decades on the skin, this process can take many years and the current estimate is 10-15% of the time that steroids were used on the skin. In my case, I used steroid creams for about 15 years, although I used them intermittently for years before that. If my cumulative steroid use was 20 years, it could take me at least 2 years before my skin heals.
In the meantime, I will keep drinking the dandelion tea....
Nitric Oxide (chemical symbol NO) is a potent vasodilator, meaning that it dilates, or expands the blood vessels, increasing blood flow. Therefore, Nitric Oxide has many applications in medicine. When angina patients are given nitroglycerin, the medication converts to nitric oxide in the body and dilates the blood vessels. Similarly, Viagra medication works in a similar way by increasing blood flow and dilating the blood vessels.
Dr Marvin Rapaport MD, is a dermatologist who has worked with, and cured, many patients addicted to steroid creams. During his research he found that patients suffering from steroid rebound had abnormally high concentrations of Nitric Oxide in the blood. This was completely different to the results from patients with regular eczema. It is believed that the steroid creams artificially suppress the blood vessels, which is why the skin looks less red when you apply the creams. However, once the steroid cream is stopped, the blood vessels are free to dilate again and the body produces excess Nitric Oxide. This is why we get "red skin syndrome", the red skin being caused by the dilation of blood vessels under the skin. This can be easily illustrated by pressing down hard on the skin. The skin momentarily turns white because the blood vessels are suppressed, just like they are when steroid creams are applied.
Dr Rapaport found that these Nitric oxide levels remained high in patients for many months, and in some cases years, before they finally healed. Once the NO levels were back to normal, the skin returned to its previous, eczema-free state. Dr Rapaport is interested in finding a Nitric Oxide antagonist that could possibly reduce the NO levels quicker in steroid addicted patients and decrease the length of time it takes to recover.
In my own research, I found evidence that dandelion is a natural NO antagonist. Researchers found that the dandelion flower and root can suppress NO levels in the blood. I drink a few cups of dandelion tea every day, but I'm not sure how effective it is!
Most of the distressing symptoms, such as the burning, erythema, oozing and skin discolouration of TSW can be attributed to high NO levels in the body. It is simply a case of waiting it out until the levels return to normal. If steroids have been used for decades on the skin, this process can take many years and the current estimate is 10-15% of the time that steroids were used on the skin. In my case, I used steroid creams for about 15 years, although I used them intermittently for years before that. If my cumulative steroid use was 20 years, it could take me at least 2 years before my skin heals.
In the meantime, I will keep drinking the dandelion tea....
Tuesday, 22 May 2012
Day 184 TSW, Food Cravings and Weight Gain
I had a bit of a shock when I decided to weigh myself this morning. I've got a Wii fit game, which monitors progress over time, so I actually have a graph on there monitoring my weight over the last 4 years.
Just before I decided to quit the steroid creams, I had managed to lose almost 2 stone in weight. I was working out every day, doing plenty of aerobic exercise like zumba and dance. I was eating healthily and I was very active. On the Wii fit graph I can see that my weight was at an all time low in November, just before I stopped the creams.
Of course, once I quit the steroid creams, the first thing that hit me was the extreme tiredness, due to the adrenal glands suddenly having to cope with the major drop in artificial cortisone that I had been pumping into my body through the skin. For the first few weeks of withdrawal, I was confined to the settee, too exhausted to do even basic activities. Exercise was definitely out of the question!
Even when the tiredness had passed, my skin felt so tight and uncomfortable that I didn't want to move around and get sweaty. My natural inclination was to rest....and eat...
If you have ever read the book "the hungry caterpillar" you will have some idea of my eating habits during withdrawal. In fact, it is a very common symptom of withdrawal to have an increased appetite. I think this may be due to the demands on the body to heal itself. The body wants lots of vitamins, minerals and proteins to help rebuild the skin, a bit like builders demanding raw materials for renovating a building.
The problem was, I supplied a bit too much in the way of raw materials. Over the last 6 months I have chomped, chewed and gorged my way through mounds of food, not all of it healthy. I also had cravings for sweet stuff. I think this may have a link with the adrenals, as they produce cortisol, which helps regulate and process blood sugar.
Yesterday evening was lovely and sunny and I decided to take a walk with the family. We played football on the field by our house and walked over some hills nearby. We were out for about an hour, but I was quite out of breath by the end. I realised my fitness levels had dropped dramatically, as I have always been someone who walks everywhere.
So that led me to weighing myself this morning. I had put almost a stone on since November when I stopped the steroid creams.
Ouch.
The combination of tiredness and sore skin, as well as the fact that I have been a lot less active (and comfort eating for Britain), has led to me becoming a little more well-rounded.
Methinks it is time to take action, get active and stop eating those delicious....sugary...irresistible....and FATTENING snacks.
Just before I decided to quit the steroid creams, I had managed to lose almost 2 stone in weight. I was working out every day, doing plenty of aerobic exercise like zumba and dance. I was eating healthily and I was very active. On the Wii fit graph I can see that my weight was at an all time low in November, just before I stopped the creams.
Of course, once I quit the steroid creams, the first thing that hit me was the extreme tiredness, due to the adrenal glands suddenly having to cope with the major drop in artificial cortisone that I had been pumping into my body through the skin. For the first few weeks of withdrawal, I was confined to the settee, too exhausted to do even basic activities. Exercise was definitely out of the question!
Even when the tiredness had passed, my skin felt so tight and uncomfortable that I didn't want to move around and get sweaty. My natural inclination was to rest....and eat...
If you have ever read the book "the hungry caterpillar" you will have some idea of my eating habits during withdrawal. In fact, it is a very common symptom of withdrawal to have an increased appetite. I think this may be due to the demands on the body to heal itself. The body wants lots of vitamins, minerals and proteins to help rebuild the skin, a bit like builders demanding raw materials for renovating a building.
The problem was, I supplied a bit too much in the way of raw materials. Over the last 6 months I have chomped, chewed and gorged my way through mounds of food, not all of it healthy. I also had cravings for sweet stuff. I think this may have a link with the adrenals, as they produce cortisol, which helps regulate and process blood sugar.
Yesterday evening was lovely and sunny and I decided to take a walk with the family. We played football on the field by our house and walked over some hills nearby. We were out for about an hour, but I was quite out of breath by the end. I realised my fitness levels had dropped dramatically, as I have always been someone who walks everywhere.
So that led me to weighing myself this morning. I had put almost a stone on since November when I stopped the steroid creams.
Ouch.
The combination of tiredness and sore skin, as well as the fact that I have been a lot less active (and comfort eating for Britain), has led to me becoming a little more well-rounded.
Methinks it is time to take action, get active and stop eating those delicious....sugary...irresistible....and FATTENING snacks.
Monday, 21 May 2012
Day 183: Six Month Update (photos)
Today is a bit of a milestone for me, as I have been off the steroid creams for 6 whole months! I started back in November 2011 and it has been a rough ride. I remember when I first found out about steroid withdrawal and reading that it typically took between 6-36 months for your skin to heal completely. Maybe I was an optimist, but I thought would be better by the end of the 6 months! Actually, I think most people do. There are many accounts on the itsan forums of people who thought they would be the exception to the rule and be healed in 3-6 months, or maybe that they would not go through all the nasty stuff like the oozing and redness.
Like I have said before, this is a marathon rather than a sprint and what I have learned over the last 6 months is that the only ones who heal quickly are children and those who have only used steroid creams for a short time. As I have 15 years or more of steroid use history, I now know my healing will be a lot longer. I currently estimate that it will probably be another 18 months before my skin is normal.
That's a lot of blogging, but I know it will be worth it!
Am I disappointed that I am not healed yet? Well, yes, of course it would be lovely to be boasting creamy white skin at this point, but I am pleased with the progress I have made this far. I also know that the place I am now is infinitely better than the place I would have been in if I had continued down the topical corticosteroid route. The creams would have continued to damage and atrophy my skin and in all likelihood cause other conditions, such as Cushings syndrome and cataracts after many years. And of course, I would have continued to have needed stronger and stronger creams to get any kind of effect.
I took the following photos this morning. I think they illustrate how slow this process is. Many of them seem like a step backwards from previous progress pictures, but I'm afraid that is the nature of TSW.
So this picture shows that my face is still quite pink! It is funny in a way, because my natural skin colour is very pale and I had a teacher at school who was always concerned with how pale I looked. maybe I should email her this photo, as I certainly have some colour in my cheeks!
My right cheek is more blotchy than the left, as it hasn't fully recovered from the flare a week or so ago. You can see that my left cheek actually has a lighter skin tone, which is the real me trying to break through!
My skin is not so bad now that I have to hide from people. When I am out, I wear my hair down, which hides some of the redness on my cheeks. It is very apparent that the skin on my face has a long way to go, but this is my own fault for slapping potent steroids on it for years.
Reality check.
Like I have said before, this is a marathon rather than a sprint and what I have learned over the last 6 months is that the only ones who heal quickly are children and those who have only used steroid creams for a short time. As I have 15 years or more of steroid use history, I now know my healing will be a lot longer. I currently estimate that it will probably be another 18 months before my skin is normal.
That's a lot of blogging, but I know it will be worth it!
Am I disappointed that I am not healed yet? Well, yes, of course it would be lovely to be boasting creamy white skin at this point, but I am pleased with the progress I have made this far. I also know that the place I am now is infinitely better than the place I would have been in if I had continued down the topical corticosteroid route. The creams would have continued to damage and atrophy my skin and in all likelihood cause other conditions, such as Cushings syndrome and cataracts after many years. And of course, I would have continued to have needed stronger and stronger creams to get any kind of effect.
I took the following photos this morning. I think they illustrate how slow this process is. Many of them seem like a step backwards from previous progress pictures, but I'm afraid that is the nature of TSW.
My right cheek is more blotchy than the left, as it hasn't fully recovered from the flare a week or so ago. You can see that my left cheek actually has a lighter skin tone, which is the real me trying to break through!
My skin is not so bad now that I have to hide from people. When I am out, I wear my hair down, which hides some of the redness on my cheeks. It is very apparent that the skin on my face has a long way to go, but this is my own fault for slapping potent steroids on it for years.
My neck and chest areas have always been problematic throughout this whole withdrawal process. Even at 6 months, my neck still oozes at night and my chest area is usually red and inflamed when I wake up because of how I have slept.
My palm is covered with tiny watery blisters that itch. I think part of the reason that my palm is like this is because I have to wear socks over my hands at night to stop me scratching myself and the socks make my hands sweat in the night. This symptom is not too unbearable, but it stings when I wash my hands.
This is the latest picture of the "wet wound" on my left calf. It doesn't look too bad and isn't bothering me all that much. Wet wounds are a real problem in TSW. I have had this one on my leg for about 5 months now. Using moist wound techniques, I can reduce it by about 90%, but when I flare, it returns. If I sit at the computer for a long period, the skin weeps fluid, but if I raise my legs, it improves. It is always better after I have slept, as there is no pressure on my legs when I sleep. I have an identical wound on my right calf and also a similar wound on the back of my right leg. I think they will go away by themselves over time, but healing is very slow. The wounds form a papery scab which will fall off and reveal weeping lesions.
This is the wound on the back of my leg. it is similar to the calf wounds in that it takes a long time to heal. The good news is that you can see that the rest of the skin on my leg looks normal, so it isn't all bad news!
In conclusion, it has been an interesting 6 months. At the moment, the skin seems to be stuck in what I would call "mid-flare". It is not quite flaring, but it is certainly redder than it has been in previous months.
I am happy to see areas of white skin again after all this time, namely on my legs, upper arms and back. I know that the rest of me will follow. I have my little routines and habits now that help me cope with the withdrawal process: I wear loose cotton clothing during the day and brushed cotton pyjamas at night to mop up the neck ooze. I drink lots of dandelion tea and always have a relaxing chamomile tea at night, as well as an antihistamine to stop the itch. I bath in epsom salts every few days to keep the bacteria levels down on my skin. I also use hemp cream as a moisturiser, but never use as a treatment, only as a lubrication for ease of movement. I have a tube of hemp cream in every room, and in my bag too!
Another bonus of quitting steroid creams is that the cold sore virus that I used to get every couple of months seems to have stopped. I think this is because the steroid creams suppressed my immune response and now my skin is getting its immunity back. I also used to get a lot of conjunctivitis attacks in my eyes, again, I think that this was due to the steroid creams suppressing my immunity. I have not had a single case of bacterial or viral conjunctivitis since withdrawing from steroids.
I am happy with the choice that I made to quit steroids and have no regrets. I would never go back to using corticosteroid creams now I know the extent of the damage they have done.
Withdrawal is hell, but recovery will be so sweet!
My next milestone will be my 200 day milestone and I will post some more photos then.
Every day is another day closer to perfect skin.....
Wednesday, 16 May 2012
A-Z of Corticosteroid Withdrawal: Metallic Taste
M is for Metallic Taste in Mouth
As I have mentioned in previous posts, the symptoms of topical steroid withdrawal vary from person to person. I don't think that anyone would be unlucky enough to get all of the symptoms, but by doing this A-Z, I can at least cover some of the more common side effects experienced by people stopping steroid creams.
I have to admit, that I haven't personally experienced the symptom that I am discussing today, but judging from the comments on the ITSAN forum, many people have, so that is why it deserves a mention.
A lot of people in TSW talk about a strange metallic taste in the mouth. I don't really understand what could be causing this, but there are too many people reporting the same symptom for it to be a coincidence. My only theory is that possibly it could be related to the oozing that we experience, when the serum fluid leaks from the skin, or possibly something to do with the immune system. As I say, these are just guesses, as I am not a doctor.
According to some medical websites, a metallic taste in the mouth is not usually a serious symptom, but it can indicate an underlying health issue or can be a side effect of certain medication. It can also occur in allergic reactions, which may suggest a link with TSW and hypersensitivity.
Here are some of the comments that people have made about this strange symptom:
"I think any mucous membranes can be affected - I've had issues with
eyes, sinuses, ears and gut! And my mouth has had metallic taste, loss
of taste and strange big blisters on the soft palate since starting
withdrawal."
" I walk around the house crying all of the time. Have dropped 8 lbs now. No appetite. Have metalic taste in mouth. Not sleeping."
"Come to think of it, while I was still using topical steroids, I complained of a metal taste in my mouth and thought it was a filling from my tooth, but it is gone now."
It seems that the metallic taste in the mouth is quite normal during steroid withdrawal and may be annoying, but is not too troublesome compared to some of the other symptoms that we can experience.
As I have mentioned in previous posts, the symptoms of topical steroid withdrawal vary from person to person. I don't think that anyone would be unlucky enough to get all of the symptoms, but by doing this A-Z, I can at least cover some of the more common side effects experienced by people stopping steroid creams.
I have to admit, that I haven't personally experienced the symptom that I am discussing today, but judging from the comments on the ITSAN forum, many people have, so that is why it deserves a mention.
A lot of people in TSW talk about a strange metallic taste in the mouth. I don't really understand what could be causing this, but there are too many people reporting the same symptom for it to be a coincidence. My only theory is that possibly it could be related to the oozing that we experience, when the serum fluid leaks from the skin, or possibly something to do with the immune system. As I say, these are just guesses, as I am not a doctor.
According to some medical websites, a metallic taste in the mouth is not usually a serious symptom, but it can indicate an underlying health issue or can be a side effect of certain medication. It can also occur in allergic reactions, which may suggest a link with TSW and hypersensitivity.
Here are some of the comments that people have made about this strange symptom:
"I think any mucous membranes can be affected - I've had issues with
eyes, sinuses, ears and gut! And my mouth has had metallic taste, loss
of taste and strange big blisters on the soft palate since starting
withdrawal."
" I walk around the house crying all of the time. Have dropped 8 lbs now. No appetite. Have metalic taste in mouth. Not sleeping."
"Come to think of it, while I was still using topical steroids, I complained of a metal taste in my mouth and thought it was a filling from my tooth, but it is gone now."
It seems that the metallic taste in the mouth is quite normal during steroid withdrawal and may be annoying, but is not too troublesome compared to some of the other symptoms that we can experience.
Tuesday, 15 May 2012
Day 177: Photo
I woke up this morning and the right side of my face felt paralysed. I realised that the skin had been weeping in the night and had crusted over slightly and the crust had hardened on my skin.
My chin was wet with clear ooze.
The rest of my body is OK, and I'm not sure whey my face is flaring so badly. Only the right side is affected.
Here is a photo of my poor face this morning:
At times like these, it feels like progress is three steps forward, two steps back.
The important thing to remember that even if this is the case, I am still making one step forward each time, albeit very slowly!
The process of steroid withdrawal has been likened to watching hair grow. Progress is excruciatingly slow, and it can often feel as if it is going nowhere. It is only when I look back at the photos I took early on in withdrawal that I can see that I am making progress. Even this blotching is better than being on the steroid creams and doing permanent damage.
Only yesterday, my husband was telling me how good my skin was looking and how it is going to thicken up and get healthy. I truly believe that to be the case.
I hope this blog shows the reality of steroid withdrawal, but ultimately, I hope the photos show the progression from severe rebound to healed skin.
Realistically, as I am near 6 months off the creams, I estimate that my skin could take another year or so to heal completely. 15 years of steroid damage is a lot of damage to undo. Those who are lucky enough to recognise the symptoms of steroid addiction early can get off the creams and avoid having a long withdrawal process. Also, kids addicted to steroid heal quickly, sometimes in a matter of a few weeks or months.
I was reading an interesting article on the Internet about the correlation between the advent of steroid therapy 50 years ago and the increase in conditions such as asthma and eczema. Whilst doctors scratch their heads as to the cause of the increase in these conditions, could there be a connection? Eczema and asthma treated with steroids cause an addiction phase which means that these conditions do not go away on their own. Childhood eczema can be outgrown, but prolonged steroid use leads to Red Skin Syndrome that causes an untreatable spreading rash that does not respond to steroid creams, requiring more potent creams to manage the situation. The condition, which could have gone away by itself, becomes a lifelong illness. Interestingly, before the advent of steroid creams, when people used herbal remedies and tar ointments to treat skin conditions, there were very few reports of eczema.
Food for thought, huh?
My chin was wet with clear ooze.
The rest of my body is OK, and I'm not sure whey my face is flaring so badly. Only the right side is affected.
Here is a photo of my poor face this morning:
The important thing to remember that even if this is the case, I am still making one step forward each time, albeit very slowly!
The process of steroid withdrawal has been likened to watching hair grow. Progress is excruciatingly slow, and it can often feel as if it is going nowhere. It is only when I look back at the photos I took early on in withdrawal that I can see that I am making progress. Even this blotching is better than being on the steroid creams and doing permanent damage.
Only yesterday, my husband was telling me how good my skin was looking and how it is going to thicken up and get healthy. I truly believe that to be the case.
I hope this blog shows the reality of steroid withdrawal, but ultimately, I hope the photos show the progression from severe rebound to healed skin.
Realistically, as I am near 6 months off the creams, I estimate that my skin could take another year or so to heal completely. 15 years of steroid damage is a lot of damage to undo. Those who are lucky enough to recognise the symptoms of steroid addiction early can get off the creams and avoid having a long withdrawal process. Also, kids addicted to steroid heal quickly, sometimes in a matter of a few weeks or months.
I was reading an interesting article on the Internet about the correlation between the advent of steroid therapy 50 years ago and the increase in conditions such as asthma and eczema. Whilst doctors scratch their heads as to the cause of the increase in these conditions, could there be a connection? Eczema and asthma treated with steroids cause an addiction phase which means that these conditions do not go away on their own. Childhood eczema can be outgrown, but prolonged steroid use leads to Red Skin Syndrome that causes an untreatable spreading rash that does not respond to steroid creams, requiring more potent creams to manage the situation. The condition, which could have gone away by itself, becomes a lifelong illness. Interestingly, before the advent of steroid creams, when people used herbal remedies and tar ointments to treat skin conditions, there were very few reports of eczema.
Food for thought, huh?
Monday, 14 May 2012
A-Z of Corticosteroid Withdrawal: Lymph
L is for Lymph
Before I stopped using the steroid creams, I didn't really know much about lymph or the lymphatic system.
The truth is, that lymph is pretty amazing stuff. You could even call it the "stuff of life".
Lymph is a fluid that circulates around the body. You have twice as much lymph as blood. The lymph bathes all of the body cells and removes the waste matter, such as bacteria. If the lymph stopped moving, we would die within hours.
The problem is that the lymphatic system does not have a pump like the heart to keep it moving round the body. The movement of lymph is powered by our breathing and our movement.
This can cause a problem when it comes to steroid withdrawal.
For our bodies to heal well, we ideally need the lymph to be moving around the body. Unfortunately, once the first symptoms of steroid rebound hit, we feel fatigued and listless and the first reaction of the body is to rest as much as possible. Any notion of exercise seems alien, as we have neither the motivation or energy to move around too much. Another issue is that exercise causes us to sweat, and when your skin is already hot and burning, sweat is the last thing you need!
Many going through steroid withdrawal have seen the importance of keeping the lymphatic system moving, even when we feel awful. After all, sitting on the settee all day and not moving will just cause the lymph to slow down and eventually lead to us feeling even worse. Therefore, during steroid withdrawal it is important to try and fit some sort of gentle exercise into the daily routine to stimulate lymph flow. Some have found that it helps to buy a small rebounder trampoline, as it has been well documented that this type of equipment can help the lymph flow better around the body. Even a gentle walk up and down stairs or around the block will help to get the lymph flowing and get the body healing.
A common symptom of steroid withdrawal is swollen lymph nodes, with many people experiencing this symptom. I am quite lucky, as I have not personally experienced this myself.
Here are a few comments from the members of the itsan forum about lymph:
"I also have swollen lymph nodes in the groin area which have slowly gotten bigger over the past few months. I am meeting with a surgeon this Wednesday for a possible biopsy; blood tests did not show any abnormalities but my primary physician still wants to look at nodes under a microscope."
" I've had swollen lymph nodes too. Mine never went down, and
it's been over a year. I have them under the armpit, both sides of my
groin, a small one on my neck and a small one on my upper arm. Dr.
Rapaport checked me out and said they weren't anything to be concerned
about because this is to be expected with so many open sores and minor
infections. He didn't think antibiotics were necessary, and that the
nodes were fairly small. (They're about the size of the tip of
finger.) If yours are really big, it could be good to get them
checked out, but as you can see, a lot of us get them. "
"I'm pretty sure the lymph nodes are swollen because the body is fighting to restore health and balance."
"It's common to have swollen lymph nodes as there's lots of inflammation and congestion to fight. It's amazing how even after so long the body will sort it all out."
Swollen lymph nodes are a very common symptom of TSW and a sign that the body is healing. We can be sure that during steroid withdrawal, the body knows how best to heal itself and we should let our bodies do their job. As I have mentioned, gentle exercise, or use of a rebounder trampoline can help the lymphatic system even more and put us on the road to recovery from the steroid-induced nightmare.
Before I stopped using the steroid creams, I didn't really know much about lymph or the lymphatic system.
The truth is, that lymph is pretty amazing stuff. You could even call it the "stuff of life".
Lymph is a fluid that circulates around the body. You have twice as much lymph as blood. The lymph bathes all of the body cells and removes the waste matter, such as bacteria. If the lymph stopped moving, we would die within hours.
The problem is that the lymphatic system does not have a pump like the heart to keep it moving round the body. The movement of lymph is powered by our breathing and our movement.
This can cause a problem when it comes to steroid withdrawal.
For our bodies to heal well, we ideally need the lymph to be moving around the body. Unfortunately, once the first symptoms of steroid rebound hit, we feel fatigued and listless and the first reaction of the body is to rest as much as possible. Any notion of exercise seems alien, as we have neither the motivation or energy to move around too much. Another issue is that exercise causes us to sweat, and when your skin is already hot and burning, sweat is the last thing you need!
Many going through steroid withdrawal have seen the importance of keeping the lymphatic system moving, even when we feel awful. After all, sitting on the settee all day and not moving will just cause the lymph to slow down and eventually lead to us feeling even worse. Therefore, during steroid withdrawal it is important to try and fit some sort of gentle exercise into the daily routine to stimulate lymph flow. Some have found that it helps to buy a small rebounder trampoline, as it has been well documented that this type of equipment can help the lymph flow better around the body. Even a gentle walk up and down stairs or around the block will help to get the lymph flowing and get the body healing.
A common symptom of steroid withdrawal is swollen lymph nodes, with many people experiencing this symptom. I am quite lucky, as I have not personally experienced this myself.
Here are a few comments from the members of the itsan forum about lymph:
"I also have swollen lymph nodes in the groin area which have slowly gotten bigger over the past few months. I am meeting with a surgeon this Wednesday for a possible biopsy; blood tests did not show any abnormalities but my primary physician still wants to look at nodes under a microscope."
" I've had swollen lymph nodes too. Mine never went down, and
it's been over a year. I have them under the armpit, both sides of my
groin, a small one on my neck and a small one on my upper arm. Dr.
Rapaport checked me out and said they weren't anything to be concerned
about because this is to be expected with so many open sores and minor
infections. He didn't think antibiotics were necessary, and that the
nodes were fairly small. (They're about the size of the tip of
finger.) If yours are really big, it could be good to get them
checked out, but as you can see, a lot of us get them. "
"I'm pretty sure the lymph nodes are swollen because the body is fighting to restore health and balance."
"It's common to have swollen lymph nodes as there's lots of inflammation and congestion to fight. It's amazing how even after so long the body will sort it all out."
Swollen lymph nodes are a very common symptom of TSW and a sign that the body is healing. We can be sure that during steroid withdrawal, the body knows how best to heal itself and we should let our bodies do their job. As I have mentioned, gentle exercise, or use of a rebounder trampoline can help the lymphatic system even more and put us on the road to recovery from the steroid-induced nightmare.
Friday, 11 May 2012
Day 173 The Value of the Steroid Market
My flare seems to have subsided a little, although the skin still seems sensitive. It is flaking a lot, which would indicate the end of a flare. The whole top layer of facial skin seems to be peeling off in one go. I feel like I have had a surgical peel procedure!
I have been researching steroid-related articles over the last few days for ITSAN, so that hopefully, the articles can be posted on the itsan.org site to show people that steroid addiction is real. During my research I uncovered quite a few interesting things. For example, I discovered that the topical steroid market is worth $1.1 billion. 7.7 million prescriptions are written annually in the U.S. by dermatologists for low-potency steroid products--THIS DOES NOT INCLUDE, mid-high potency steroids, or OTC Topical Steroids.
Another thing I discovered was that the Japanese are so much more clued up about steroid addiction than we are in the West. it can be hard finding Japanese articles about steroid addiction because you need to search using the Japanese tileset, but I did find this webpage with loads of article links. You may need to use google translate function to read it.
Even the Japanese Wikipedia has a whole page dedicated to steroid withdrawal and rebound. Many dermatologists in japan are experts on the subject. Doctors in the West would do well to follow the lead taken by these pioneering dermatologists.
I have been researching steroid-related articles over the last few days for ITSAN, so that hopefully, the articles can be posted on the itsan.org site to show people that steroid addiction is real. During my research I uncovered quite a few interesting things. For example, I discovered that the topical steroid market is worth $1.1 billion. 7.7 million prescriptions are written annually in the U.S. by dermatologists for low-potency steroid products--THIS DOES NOT INCLUDE, mid-high potency steroids, or OTC Topical Steroids.
Another thing I discovered was that the Japanese are so much more clued up about steroid addiction than we are in the West. it can be hard finding Japanese articles about steroid addiction because you need to search using the Japanese tileset, but I did find this webpage with loads of article links. You may need to use google translate function to read it.
Even the Japanese Wikipedia has a whole page dedicated to steroid withdrawal and rebound. Many dermatologists in japan are experts on the subject. Doctors in the West would do well to follow the lead taken by these pioneering dermatologists.
Thursday, 10 May 2012
A-Z of Corticosteroid Withdrawal: Knee and Joint Swelling
K is for Knee and Joint Swelling:
Swelling, or oedema, is a symptom that many people experience when they withdraw from steroid creams. I do not have a medical background, and have no idea why this occurs, but it cases of oedema are well reported on in the studies by Dr Fukaya MD and Dr Rapaport MD. My theory is that the swelling has something to do with the blood vessels and the flow of blood in the body.
I consider myself quite lucky in that I haven't been too badly affected by oedema. In the first few weeks of steroid withdrawal, I had no swelling at all and though I may escape completely, but a couple of months into withdrawals, I noticed that the back of my right knee was slightly swollen, as if it contained fluid. It felt heavy to lift and the skin felt hard. I found that the best way to deal with the problem was by raising my legs above heart level, which seemed to help the circulation. I found that the swelling was always worse in the evening and it was usually gone in the morning after a good sleep. The problem only lasted a month or two, and now the only swelling I have is on my eyelids in the morning, which I think is to do with hypersensitivity and allergies and unrelated to the joint swelling.
As I say, I feel I have got away quite lightly, as I know that many suffer really badly with swellings during TSW. Here are some comments that people on the itsan forum have made about swelling:
" At the moment my left arm is very swollen, mainly the elbow area which is a pain as I can't straighten my arm nor bend it very much :s hope the right arm doesn't become as swollen or else it'll be hard to even do anything around the house!"
" too had severe oedema in my legs (and arms) and it has all gone now. In months 2 & 3 I had difficulty walking from my bed to the bathroom and my legs ached and ached"
Here are some pictures that a brave lady posted on the itsan site to show how severe the swelling due to steroid withdrawal can be:
The interesting thing about these photos is that you can clearly see the white areas on the fingers and toes that are so characteristic of steroid withdrawal. It is quite clear to see that this is not eczema, as some wrongly conclude. This lady had been on strong steroid all her life and when she stopped, she swelled up like this.
Clearly the system for prescribing potent steroid creams needs stricter regulation. People shouldn't have to go through this kind of extreme reaction when stopping a skin cream.
Swelling, or oedema, is a symptom that many people experience when they withdraw from steroid creams. I do not have a medical background, and have no idea why this occurs, but it cases of oedema are well reported on in the studies by Dr Fukaya MD and Dr Rapaport MD. My theory is that the swelling has something to do with the blood vessels and the flow of blood in the body.
I consider myself quite lucky in that I haven't been too badly affected by oedema. In the first few weeks of steroid withdrawal, I had no swelling at all and though I may escape completely, but a couple of months into withdrawals, I noticed that the back of my right knee was slightly swollen, as if it contained fluid. It felt heavy to lift and the skin felt hard. I found that the best way to deal with the problem was by raising my legs above heart level, which seemed to help the circulation. I found that the swelling was always worse in the evening and it was usually gone in the morning after a good sleep. The problem only lasted a month or two, and now the only swelling I have is on my eyelids in the morning, which I think is to do with hypersensitivity and allergies and unrelated to the joint swelling.
As I say, I feel I have got away quite lightly, as I know that many suffer really badly with swellings during TSW. Here are some comments that people on the itsan forum have made about swelling:
" At the moment my left arm is very swollen, mainly the elbow area which is a pain as I can't straighten my arm nor bend it very much :s hope the right arm doesn't become as swollen or else it'll be hard to even do anything around the house!"
" too had severe oedema in my legs (and arms) and it has all gone now. In months 2 & 3 I had difficulty walking from my bed to the bathroom and my legs ached and ached"
Here are some pictures that a brave lady posted on the itsan site to show how severe the swelling due to steroid withdrawal can be:
Clearly the system for prescribing potent steroid creams needs stricter regulation. People shouldn't have to go through this kind of extreme reaction when stopping a skin cream.
Wednesday, 9 May 2012
Day 171 My Asthma and TSW
My current flare is still ongoing, but seems to be less intense today. Although I don't look any better, I do feel a bit better and I managed to go out last night, even though I didn't feel particularly sociable due to the state of my face. During steroid withdrawal it does you good to get outside, even if it is a short walk to a local shop. It is very easy to withdraw from the world and shut yourself away, but trying to keep daily routine going as normal is a worthwhile challenge.
I have no choice. I have to fetch the kids from school every day, which means no matter what state my skin is in, I have to go out. A lot of the time, I feel OK, even though I know my skin looks bad. The important thing for me is feeling well. I'm beyond caring what my skin looks like anymore!
On the subject of feeling well, I want to make an important point about steroid inhalers for asthma. Most people with asthma have a blue inhaler, which is a reliever inhaler and does not contain steroids. Others, myself included, need a preventer inhaler, which does contain a steroid. As I am recovering from steroid addiction, I am concerned about the effect that the inhaled steroid will have on my skin healing process.
The information out there is vague to say the least. With many doctors even denying the existence of steroid addiction, there is very little information out there about the use of steroid inhalers and Red Skin Syndrome. Dr Rapaport MD, who has treated over 2000 people with Red Skin Syndrome says that steroid inhalers may slow the healing process, but should be taken if necessary. In his opinion, the bronchii in the lungs may become addicted to steroids like the skin. However, no scientific study has been undertaken on this subject.
Some people have successfully managed to wean themselves off the steroid inhalers. In fact, a lot of people find that their asthma symptoms improve dramatically once the steroid creams are stopped. With this in mind, I decided to try and wean myself down from my current dose of Seretide (Advair) from 2 puffs a day to just one.
At first, things seemed to go OK, and for a few days I was fine. However, after a week, I noticed that I was coughing more and more until it got to the point that my lungs were so clogged up with mucus that I was having trouble breathing. I presumed I had a chest infection, but when I started to resume the previous dose of Seretide, the symptoms "magically" disappeared and my breathing went back to normal.
It seems that my lungs had a rebound effect the same as my skin upon steroid cessation, but I can't mess about with my lungs. I need them to live! Regretfully, I have had to resume my previous dose of inhaled steroids for now. I hope that the steroids won't impact too much on my skin healing process. I believe that my lungs are addicted to steroids and need a maintenance dose of steroid to function normally.
However, I have a few tricks up my sleeve....
Firstly, I make sure that I rinse my mouth after inhaling the steroid. As the inhaler is a spray, some of the steroid does not go into the lungs, but adheres to the inside of the mouth and throat, where it can be absorbed or swallowed. By rinsing with water and gargling, I ensure that the only steroid going into my body, is the one that enters the lungs and I wash away any excess.
I bought a salt pipe. This device uses salt to clear the airways. You breathe through the pipe for 5 minutes a day. It is a good way to clear the lungs of mucus.
I also bought a Powerbreathe device, which uses resistance to strengthen the respiratory muscles.
Maybe, over time, I will be able to decrease the amount of inhaled steroid I need. I think it is important not to put my health at risk, and while I would love to be completely steroid free, I appreciate that this might take considerable time. At the moment, I need the inhaler, so have to take it.
I have no choice. I have to fetch the kids from school every day, which means no matter what state my skin is in, I have to go out. A lot of the time, I feel OK, even though I know my skin looks bad. The important thing for me is feeling well. I'm beyond caring what my skin looks like anymore!
On the subject of feeling well, I want to make an important point about steroid inhalers for asthma. Most people with asthma have a blue inhaler, which is a reliever inhaler and does not contain steroids. Others, myself included, need a preventer inhaler, which does contain a steroid. As I am recovering from steroid addiction, I am concerned about the effect that the inhaled steroid will have on my skin healing process.
The information out there is vague to say the least. With many doctors even denying the existence of steroid addiction, there is very little information out there about the use of steroid inhalers and Red Skin Syndrome. Dr Rapaport MD, who has treated over 2000 people with Red Skin Syndrome says that steroid inhalers may slow the healing process, but should be taken if necessary. In his opinion, the bronchii in the lungs may become addicted to steroids like the skin. However, no scientific study has been undertaken on this subject.
Some people have successfully managed to wean themselves off the steroid inhalers. In fact, a lot of people find that their asthma symptoms improve dramatically once the steroid creams are stopped. With this in mind, I decided to try and wean myself down from my current dose of Seretide (Advair) from 2 puffs a day to just one.
At first, things seemed to go OK, and for a few days I was fine. However, after a week, I noticed that I was coughing more and more until it got to the point that my lungs were so clogged up with mucus that I was having trouble breathing. I presumed I had a chest infection, but when I started to resume the previous dose of Seretide, the symptoms "magically" disappeared and my breathing went back to normal.
It seems that my lungs had a rebound effect the same as my skin upon steroid cessation, but I can't mess about with my lungs. I need them to live! Regretfully, I have had to resume my previous dose of inhaled steroids for now. I hope that the steroids won't impact too much on my skin healing process. I believe that my lungs are addicted to steroids and need a maintenance dose of steroid to function normally.
However, I have a few tricks up my sleeve....
Firstly, I make sure that I rinse my mouth after inhaling the steroid. As the inhaler is a spray, some of the steroid does not go into the lungs, but adheres to the inside of the mouth and throat, where it can be absorbed or swallowed. By rinsing with water and gargling, I ensure that the only steroid going into my body, is the one that enters the lungs and I wash away any excess.
I bought a salt pipe. This device uses salt to clear the airways. You breathe through the pipe for 5 minutes a day. It is a good way to clear the lungs of mucus.
I also bought a Powerbreathe device, which uses resistance to strengthen the respiratory muscles.
Maybe, over time, I will be able to decrease the amount of inhaled steroid I need. I think it is important not to put my health at risk, and while I would love to be completely steroid free, I appreciate that this might take considerable time. At the moment, I need the inhaler, so have to take it.
Tuesday, 8 May 2012
Day 170: Bad Flare Photos
I had a bad flare over the weekend and it shows no sign of easing up any time soon. This is probably the worst flare I have had in a few months. It has floored me, as it has taken me completely by surprise. I didn't think I would get anything like this 5 1/2 months into withdrawals when everything was going so well. I don't know whether anything in particular has triggered the flare. There seems to be no pattern with flares. I decided to post some photos, but I warn you, they are not pleasant viewing!
My cheek looks like it has been slapped. It is very red and sore and itchy. My chin and the area round my mouth are bad too. My neck and chest ooze fluid in the night. Very uncomfortable. My face feels like it is burning, like someone has used a blowtorch on my skin. Needless to say, I don't feel like facing people at the moment and am keeping myself holed away at home. I think my right cheek is worst because that is the side I sleep on most.
The wet wound on my leg is oozing fluid again. I had previously got it under control, but when I flare it starts to ooze again. I have an identical wound on my other leg.
My fingers and hands are covered with small watery blisters. They are quite itchy and sore.
My arms itch like mad. I put socks on my hands in the night to stop myself scratching, but I pull them off and itch my arms, causing the damage seen in the photo. If I left them alone, I think they would heal OK.
This picture probably doesn't do justice to how bad my eye actually looks. Both eyes are bloodshot and have been for a few days, revealing the damage that long term steroid use has done to the blood vessels in the eye. When I wake up, my eyes are watery and my eyelids puffy. I usually have weeping cracks on my eyelids too.
In addition to all this, my skin is flaking too, leaving a little trail of flakes wherever I go.
I find it hard to look at the photos as they are quite depressing. The only hope I have is that these things tend to turn around quite quickly and my skin may be fine again tomorrow.
My sympathy goes to all my suffering skin friends worldwide who are going through the same thing.
In addition to all this, my skin is flaking too, leaving a little trail of flakes wherever I go.
I find it hard to look at the photos as they are quite depressing. The only hope I have is that these things tend to turn around quite quickly and my skin may be fine again tomorrow.
My sympathy goes to all my suffering skin friends worldwide who are going through the same thing.
Monday, 7 May 2012
Day 169 Looking in the Mirror
Still flaring. Yuk. Not the greatest Bank Holiday Weekend then. The weather has been a washout and my skin has been raging. Bad combination.
I am thinking of destroying all the mirrors in my house.
You know how you have this mental image of what you look like, but then you happen to pass a mirror and are shocked to find that you have more grey hairs than you originally thought, or maybe your face is a bit wrinklier, or your body a bit chubbier than you remember?
Well, imagine what it is like with a skin condition!
I have this picture in my head of what I look like, unrealistically based on what I looked like when I was about 17 (hehe!). Unfortunately, when I glance in the mirror, the true horror of TSW hits me like a 500lb weight. Blotchy skin, flaky patches and bloodshot eyes make me want to reel away in disgust.
I think I'm going to find a picture of someone glamorous and stick it over the mirror, at least until I have healed.....
I am thinking of destroying all the mirrors in my house.
You know how you have this mental image of what you look like, but then you happen to pass a mirror and are shocked to find that you have more grey hairs than you originally thought, or maybe your face is a bit wrinklier, or your body a bit chubbier than you remember?
Well, imagine what it is like with a skin condition!
I have this picture in my head of what I look like, unrealistically based on what I looked like when I was about 17 (hehe!). Unfortunately, when I glance in the mirror, the true horror of TSW hits me like a 500lb weight. Blotchy skin, flaky patches and bloodshot eyes make me want to reel away in disgust.
I think I'm going to find a picture of someone glamorous and stick it over the mirror, at least until I have healed.....
Sunday, 6 May 2012
Day 168 Recovering from Steroid Damage
I had truly thought that I was over the worst of the withdrawal symptoms and then a huge flare came crashing down on me like a wave this weekend, leaving me floored, and back on the settee, exhausted. I am really surprised that I have had such an intense flare, at nearly 5 and a half months off the steroid creams. it is obvious to me now, that the damage done during my 15 years of steroid cream usage is going to take a long time to recover from. When I get a flare like this, I always hope it will be the last big flare before I heal.
My skin was "on the turn" yesterday, and I couldn't face going out, apart from taking my daughter to the cinema to see Beauty and the Beast (how ironic!). I didn't mind sitting in a dark cinema. Maybe I was hoping that, like the beast in the film, I might undergo a magical transformation and become beautiful again!
I had a good sleep, but when I woke up, my face looked like it had been slapped on my right cheek. The rest of my face was very dry and flaky. I could actually peel off big flakes of skin. I don't know whether to moisturise in case I am hypersensitive at the moment, so I am leaving it to recover without moisturisers. If the skin gets too bad, I will put a bit of hemp cream on it. My chest was weeping badly in the night and was soaking wet when I got up. It soon dried on contact with air. My neck is inflamed and both my face and neck feel as if i have been attacked with a blowtorch. My elbow flexures are tight, and stretching my arm hurts. My leg wounds are very oozy and I feel very tired, like I could fall asleep at any moment. This flare has hit hard.
It is hard to write this, because maybe someone reading it will think that steroid withdrawal is a waste of time. Here I am, over 5 months in and still flaring. However, this blog is my way of logging the whole withdrawal process, not to sugar coat it or make it sound easier or better than it is. If someone reads this and thinks I am crazy or misguided, that that is their opinion. If my experiences cause someone to conclude that steroid withdrawal is not for them, that that is also their choice. The blog is not about pushing my opinions on anyone, but I think that in years to come, when the truth about steroid addiction becomes more well known and mainstream, my experiences may help someone to make a considered decision about withdrawal. In my view, I had no other choice. the steroid creams were making my skin so thin that I could see the veins on my face and they were causing steroid rosacea. If I had continued using them, I would have needed more and more potent creams to get any improvement.
I am not anti steroid. Even Dr Rapaport prescribes steroid creams to his patients. However, I truly believe that steroid creams are over prescribed in the majority of cases and also overused by patients, such as myself. More should be done to encourage users to heed the warning leaflet inside the packaging about the appropriate length of time to use the creams.
My flares tend to be short these days, so I'm sure that this nasty one will pass in a few days.
My skin was "on the turn" yesterday, and I couldn't face going out, apart from taking my daughter to the cinema to see Beauty and the Beast (how ironic!). I didn't mind sitting in a dark cinema. Maybe I was hoping that, like the beast in the film, I might undergo a magical transformation and become beautiful again!
I had a good sleep, but when I woke up, my face looked like it had been slapped on my right cheek. The rest of my face was very dry and flaky. I could actually peel off big flakes of skin. I don't know whether to moisturise in case I am hypersensitive at the moment, so I am leaving it to recover without moisturisers. If the skin gets too bad, I will put a bit of hemp cream on it. My chest was weeping badly in the night and was soaking wet when I got up. It soon dried on contact with air. My neck is inflamed and both my face and neck feel as if i have been attacked with a blowtorch. My elbow flexures are tight, and stretching my arm hurts. My leg wounds are very oozy and I feel very tired, like I could fall asleep at any moment. This flare has hit hard.
It is hard to write this, because maybe someone reading it will think that steroid withdrawal is a waste of time. Here I am, over 5 months in and still flaring. However, this blog is my way of logging the whole withdrawal process, not to sugar coat it or make it sound easier or better than it is. If someone reads this and thinks I am crazy or misguided, that that is their opinion. If my experiences cause someone to conclude that steroid withdrawal is not for them, that that is also their choice. The blog is not about pushing my opinions on anyone, but I think that in years to come, when the truth about steroid addiction becomes more well known and mainstream, my experiences may help someone to make a considered decision about withdrawal. In my view, I had no other choice. the steroid creams were making my skin so thin that I could see the veins on my face and they were causing steroid rosacea. If I had continued using them, I would have needed more and more potent creams to get any improvement.
I am not anti steroid. Even Dr Rapaport prescribes steroid creams to his patients. However, I truly believe that steroid creams are over prescribed in the majority of cases and also overused by patients, such as myself. More should be done to encourage users to heed the warning leaflet inside the packaging about the appropriate length of time to use the creams.
My flares tend to be short these days, so I'm sure that this nasty one will pass in a few days.
Friday, 4 May 2012
A-Z of Corticosteroid Withdrawal: Jabbing Pains
J is for Jabbing Pains:
I clearly remember the first time I experienced this symptom. I was a few weeks into withdrawals, lying in bed and suddenly, I felt a sharp sensation, like a pinprick, in my leg. As I have a pet cat, I presumed that it was a flea bite, but couldn't see any sign of any fleas around! Over the next few days, I experiences more of these sharp sensations, a little bit like small electric shocks in my legs. The pains always happened when |I was relaxing on a chair or in bed and they always occurred in the areas of my body where the skin was very badly damaged, causing me to believe that there is some connection between this pain and the nerves in the body.
The pain wasn't agonising, it just took me by surprise and made me jump occasionally. For me, it is one of the least problematic symptoms of TSW. 5 months into withdrawals and I still get the jabbing pains. I just view it as another part of healing.
Of course, experiences vary with this symptom and some people get it worse than others. Here are some comments from the Google forum from people suffering from jabbing pains caused by Red Skin Syndrome:
"...last night I pretty much got no sleep as it was giving me these
tingles, maybe pins and needles type feedback that went on all night, even
after a few rounds of ice. I understand the nerve damage that results from
lots of steroid use, but wondering if when we manipulate the skin so much
through scratching it irritates the nerve endings and they fire off
indiscriminately.
I also have a place on my side that itches a lot more than the surrounding
areas and if I scratch it a lot I get these little needle-electric shocks
right there. They make me jump. "
"I feel the same way.It's hard to know what comes first and I sure get the
sharp pins in some of the worst damaged spots on my legs. Can really make me jump and
yelp! "
"...serious pins and needles and at times like
knifes sticking in me, but I don't see any red area with fever or infection. Did
you have any signs besides the pins and needles? I am so sick of this
pain ..."
Jabbing pains vary from person to person and have something to do with the nerves and skin damage.
I clearly remember the first time I experienced this symptom. I was a few weeks into withdrawals, lying in bed and suddenly, I felt a sharp sensation, like a pinprick, in my leg. As I have a pet cat, I presumed that it was a flea bite, but couldn't see any sign of any fleas around! Over the next few days, I experiences more of these sharp sensations, a little bit like small electric shocks in my legs. The pains always happened when |I was relaxing on a chair or in bed and they always occurred in the areas of my body where the skin was very badly damaged, causing me to believe that there is some connection between this pain and the nerves in the body.
The pain wasn't agonising, it just took me by surprise and made me jump occasionally. For me, it is one of the least problematic symptoms of TSW. 5 months into withdrawals and I still get the jabbing pains. I just view it as another part of healing.
Of course, experiences vary with this symptom and some people get it worse than others. Here are some comments from the Google forum from people suffering from jabbing pains caused by Red Skin Syndrome:
"...last night I pretty much got no sleep as it was giving me these
tingles, maybe pins and needles type feedback that went on all night, even
after a few rounds of ice. I understand the nerve damage that results from
lots of steroid use, but wondering if when we manipulate the skin so much
through scratching it irritates the nerve endings and they fire off
indiscriminately.
I also have a place on my side that itches a lot more than the surrounding
areas and if I scratch it a lot I get these little needle-electric shocks
right there. They make me jump. "
"I feel the same way.It's hard to know what comes first and I sure get the
sharp pins in some of the worst damaged spots on my legs. Can really make me jump and
yelp! "
"...serious pins and needles and at times like
knifes sticking in me, but I don't see any red area with fever or infection. Did
you have any signs besides the pins and needles? I am so sick of this
pain ..."
Jabbing pains vary from person to person and have something to do with the nerves and skin damage.
Thursday, 3 May 2012
A-Z of Corticosteroid Withdrawal: Itching
I is for Itching
A lot of the symptoms I have mentioned so far in the A-Z can vary from person to person. Not everyone going through topical steroid withdrawal will experience gooey eyes, swelling or the characteristic red arm and white palm rash associated with TSW. People get different combinations of symptoms. However, one symptom is common to EVERYONE. I am, of course, referring to the itch, or as it is better known, the insane itch. I am actually itching as I type about it!
Itching is nothing new to people with eczema, although doctors do not completely understand everything about itching. Current theories as to why we itch relate to the fact that the same signals that send itch messages to the brain also send pain messages. However, our response to both stimuli are complete opposites. Some believe that itching is a sign of healing and that the signal to scratch is actually the body's way of getting the lymph flowing around the body and encouraging healing. Unforunately, the usual side effect of scratching an itch is skin damage and sometimes infection.
I would like to mention a serious complication caused by itching that has happened to a couple of members of our google support group. The following post is from the forum:
" I created a seroma (like hematoma but serum) of the ear by
scratching my ears really hard. It required surgery which still didn't fix
it. Who knows how much those doctor bills will be and I just got it to
stop refilling with fluid by using a couple things, most effective was a
couple magnets - one on each side of the ear. So I think I am going to
have a pretty normal looking ear as it doesn't seem the cartilage was
affected - so no major cauliflower ear results. J*****, another skin
friend, got one of those too. It really sucked. So if I haven't said that
one enough, leave your ears alone! "
Itching is usually worse at night and there are various ways to try and deal with it. The site at itsan.org has a whole section dedicated to dealing with the itch, and another good suggestion is to look at the area as you scratch it, which will stop you from scratching too deeply and causing damage.
Here are some more comments about itching from the google group:
" I've been going through an itching fit the lat ferw hours
after zero sleep that's much more intense than ever. It's a 10 in
anybody's book. Hard to type. The waves of itching are making this kind
of panicky feeling like I'm getting ready to spontaneously combust. I've
been pacing with ice bags wrapped to my arms and baggies of ice on my neck
and sides of my trunk. I just resorted to to 2 atarax. At least I might
get some sleep. I'm raw from last night's scratch party but thought of
trying a cold shower. That ought feel pretty spectacular with all the
scrapes! Trying to breathe and visualize but wow pretty challenging. What
do you do in these situations? Skins really read and really dry. Do I
moisturize? Cold shower? Jump out a 10 story window? (just kidding) "
"I am torn right now as I cannot function from the
itching and cannot sleep at all. I don't wan't to get addicted to benz but
I feel like taking the whole bottle to stop the itching and anxiety! I
need to go to the store and can't even get dressed from itching so much!"
"The only observation I have made on J*** and these extreme
scratch attacks, is that once we have had one we dont get another of the
same severity for some time. Im not sure if thats the same for everyone
but hope its some consolation. I reckon we have a really really hideous
hour, then after that it begins to calm. He screams, cries, his little
body thrashes about, but when that has passed, and we are all exhausted we
don't get one of those for a while. So hopefully when this has passed,
whilst you will still have the itch, it hopefully will not be as intense
for a while. Also on the docs advice, when J*** gets bad he has very high
doses of anti-histamines, think they are almost adult sized ones. Think
you need to do all you can just to get through the frenzy, When J*** had
one in the hospital about a month ago the nurses were so shocked they
didn't even know what to do, they had never seen anything like it. "
These experiences show that the itch caused by topical steroid withdrawal is really intense. Unfortunately, the itching is also a symptom that lasts beyond the first few months. Finding succesful coping techniques is the key to managing the insane itch!
A lot of the symptoms I have mentioned so far in the A-Z can vary from person to person. Not everyone going through topical steroid withdrawal will experience gooey eyes, swelling or the characteristic red arm and white palm rash associated with TSW. People get different combinations of symptoms. However, one symptom is common to EVERYONE. I am, of course, referring to the itch, or as it is better known, the insane itch. I am actually itching as I type about it!
Itching is nothing new to people with eczema, although doctors do not completely understand everything about itching. Current theories as to why we itch relate to the fact that the same signals that send itch messages to the brain also send pain messages. However, our response to both stimuli are complete opposites. Some believe that itching is a sign of healing and that the signal to scratch is actually the body's way of getting the lymph flowing around the body and encouraging healing. Unforunately, the usual side effect of scratching an itch is skin damage and sometimes infection.
I would like to mention a serious complication caused by itching that has happened to a couple of members of our google support group. The following post is from the forum:
" I created a seroma (like hematoma but serum) of the ear by
scratching my ears really hard. It required surgery which still didn't fix
it. Who knows how much those doctor bills will be and I just got it to
stop refilling with fluid by using a couple things, most effective was a
couple magnets - one on each side of the ear. So I think I am going to
have a pretty normal looking ear as it doesn't seem the cartilage was
affected - so no major cauliflower ear results. J*****, another skin
friend, got one of those too. It really sucked. So if I haven't said that
one enough, leave your ears alone! "
Itching is usually worse at night and there are various ways to try and deal with it. The site at itsan.org has a whole section dedicated to dealing with the itch, and another good suggestion is to look at the area as you scratch it, which will stop you from scratching too deeply and causing damage.
Here are some more comments about itching from the google group:
" I've been going through an itching fit the lat ferw hours
after zero sleep that's much more intense than ever. It's a 10 in
anybody's book. Hard to type. The waves of itching are making this kind
of panicky feeling like I'm getting ready to spontaneously combust. I've
been pacing with ice bags wrapped to my arms and baggies of ice on my neck
and sides of my trunk. I just resorted to to 2 atarax. At least I might
get some sleep. I'm raw from last night's scratch party but thought of
trying a cold shower. That ought feel pretty spectacular with all the
scrapes! Trying to breathe and visualize but wow pretty challenging. What
do you do in these situations? Skins really read and really dry. Do I
moisturize? Cold shower? Jump out a 10 story window? (just kidding) "
"I am torn right now as I cannot function from the
itching and cannot sleep at all. I don't wan't to get addicted to benz but
I feel like taking the whole bottle to stop the itching and anxiety! I
need to go to the store and can't even get dressed from itching so much!"
"The only observation I have made on J*** and these extreme
scratch attacks, is that once we have had one we dont get another of the
same severity for some time. Im not sure if thats the same for everyone
but hope its some consolation. I reckon we have a really really hideous
hour, then after that it begins to calm. He screams, cries, his little
body thrashes about, but when that has passed, and we are all exhausted we
don't get one of those for a while. So hopefully when this has passed,
whilst you will still have the itch, it hopefully will not be as intense
for a while. Also on the docs advice, when J*** gets bad he has very high
doses of anti-histamines, think they are almost adult sized ones. Think
you need to do all you can just to get through the frenzy, When J*** had
one in the hospital about a month ago the nurses were so shocked they
didn't even know what to do, they had never seen anything like it. "
These experiences show that the itch caused by topical steroid withdrawal is really intense. Unfortunately, the itching is also a symptom that lasts beyond the first few months. Finding succesful coping techniques is the key to managing the insane itch!
Wednesday, 2 May 2012
A-Z of Corticosteroid Withdrawal: Hypersensitivity
H is for Hypersensitivity
Let me start off by pointing out that most people using steroid creams are probably hypersensitive to start with. For example, the typical steroid cream user probably has a family history of atopy, allergies, asthma and hay fever and started using the creams to control areas of dermatitis on the face or body.
However, the type of hypersensitivity that I am discussing here is the type that we experience when we stop using the steroid creams. Anyone reading this blog regularly will be aware that the skin goes crazy when stopping steroid creams, causing what is known in the medical world as "rebound phenomenon": red, itchy, burning skin. Unfortunately, another side effect of steroid rebound is an increased sensitivity to allergens, with many people reporting skin allergies to things that they had previously had no problems with.
Consider a typical example. A person stops using steroid creams and immediately, the skin goes into a rebound flare. During the next few months, that person may notice skin reactions to things that they were previously tolerant to, for example a pet dog or cat. All of a sudden, they come out in hives whenever they touch their beloved pet. This is just another side effect of steroid withdrawal, and one that Dr Rapaport assures patients will pass eventually. It is important that people prepare for any possible effects of hypersensitivity, as it can be emotionally devastating to suddenly realise you are allergic to your precious pet dog.
Another problem commonly experienced is hypersensitivity to creams applied to the skin. When someone stops using steroid creams, it can be very hard for them to find an alternative, as in the initial stages of withdrawal, everything they put on their skin causes a bad reaction. This actually happened to me, before I knew anything about steroid addiction. I remember being prescribed an emollient cream by my doctor, which I started to use on my face. At first it worked fine, but because I was reducing the steroid cream use, I went into what I know now to be a rebound flare and my skin started reacting badly to the emollient.
It can be really hard for people with TSW to find a suitable emollient that they can tolerate. Many use very simple products, such as coconut oil, palm shortening or Vaseline, but what works on one person might not necessarily suit someone else. As the weeks and months go by, the patient will find that the hypersensitivity decreases and that they can use creams that they previously could not tolerate. The same is true for cosmetics as well.
This is an important point to remember if you are considering allergy tests. If someone undergoes allergy testing during steroid withdrawal, it is likely that the test will throw up a number of "false positives", due to the major changes happening in the body, blood vessels and skin at the time. Therefore any results of allergy tests taken during withdrawal can be very misleading, and a positive result may not indicate a true or permanent allergy to a substance.
Here are some comments from the Google Support group about hypersensitivity to pets:
"I have a small Toto dog and I could pet and hold her before the
withdrawals, but now I cannot touch her. The allergy test showed allergy to
dogs, but they told me just to vacuum good and not touch her and if I do
that, I am okay. "
" I will put it simply and this is true unfortunately. I never was allergic to my dog or any dogs ever before I used steroids. I lived with dogs throughout my whole life! I became allergic to dogs slightly after I became addicted, and even after I had healed once from my 1st withdrawal (this is my second time withdrawing, I coincidentally quit once before for other reasons), I still developed skin rash after 6 months of perfect skin and living with hypoallergenic dogs. I do not know how long it will take, but I presume years before my immune system will ever desensitize to dogs again."
"I have had the same issue. I am not allergic to anything and have always
been around animals. I have always had a cat and no issues. Now I cannot
also kiss my cats or get too close to them, especially on my face because 9
times out of 10 I will get very itchy and get hives too. I am hoping and
expecting this to go away some day. "
And some comments about hypersensitivity to creams:
"I have happily used Vaseline throughout my withdrawal but just in the
last 2 weeks have found that it is no longer working for me. My skin
has started to feel hot and itchy after putting it on."
"The skin during rebound seems to be hypersensitive
and I feel certain that no external application at all is the least risky
for the skin. Use of soap and shampoo is not recommended because they wash out natural
wax on the skin. I explain that disinfectants are more effective for
sanitary purposes only*. "
Hypersensitivity is one of the longer lasting side effects of steroid withdrawal. it takes a long time, possibly years for the body to return to the state it was in before steroids. Until that time, those of us with TSW will experience hives and reactions to many things that we could previously tolerate.
Let me start off by pointing out that most people using steroid creams are probably hypersensitive to start with. For example, the typical steroid cream user probably has a family history of atopy, allergies, asthma and hay fever and started using the creams to control areas of dermatitis on the face or body.
However, the type of hypersensitivity that I am discussing here is the type that we experience when we stop using the steroid creams. Anyone reading this blog regularly will be aware that the skin goes crazy when stopping steroid creams, causing what is known in the medical world as "rebound phenomenon": red, itchy, burning skin. Unfortunately, another side effect of steroid rebound is an increased sensitivity to allergens, with many people reporting skin allergies to things that they had previously had no problems with.
Consider a typical example. A person stops using steroid creams and immediately, the skin goes into a rebound flare. During the next few months, that person may notice skin reactions to things that they were previously tolerant to, for example a pet dog or cat. All of a sudden, they come out in hives whenever they touch their beloved pet. This is just another side effect of steroid withdrawal, and one that Dr Rapaport assures patients will pass eventually. It is important that people prepare for any possible effects of hypersensitivity, as it can be emotionally devastating to suddenly realise you are allergic to your precious pet dog.
Another problem commonly experienced is hypersensitivity to creams applied to the skin. When someone stops using steroid creams, it can be very hard for them to find an alternative, as in the initial stages of withdrawal, everything they put on their skin causes a bad reaction. This actually happened to me, before I knew anything about steroid addiction. I remember being prescribed an emollient cream by my doctor, which I started to use on my face. At first it worked fine, but because I was reducing the steroid cream use, I went into what I know now to be a rebound flare and my skin started reacting badly to the emollient.
It can be really hard for people with TSW to find a suitable emollient that they can tolerate. Many use very simple products, such as coconut oil, palm shortening or Vaseline, but what works on one person might not necessarily suit someone else. As the weeks and months go by, the patient will find that the hypersensitivity decreases and that they can use creams that they previously could not tolerate. The same is true for cosmetics as well.
This is an important point to remember if you are considering allergy tests. If someone undergoes allergy testing during steroid withdrawal, it is likely that the test will throw up a number of "false positives", due to the major changes happening in the body, blood vessels and skin at the time. Therefore any results of allergy tests taken during withdrawal can be very misleading, and a positive result may not indicate a true or permanent allergy to a substance.
Here are some comments from the Google Support group about hypersensitivity to pets:
"I have a small Toto dog and I could pet and hold her before the
withdrawals, but now I cannot touch her. The allergy test showed allergy to
dogs, but they told me just to vacuum good and not touch her and if I do
that, I am okay. "
" I will put it simply and this is true unfortunately. I never was allergic to my dog or any dogs ever before I used steroids. I lived with dogs throughout my whole life! I became allergic to dogs slightly after I became addicted, and even after I had healed once from my 1st withdrawal (this is my second time withdrawing, I coincidentally quit once before for other reasons), I still developed skin rash after 6 months of perfect skin and living with hypoallergenic dogs. I do not know how long it will take, but I presume years before my immune system will ever desensitize to dogs again."
"I have had the same issue. I am not allergic to anything and have always
been around animals. I have always had a cat and no issues. Now I cannot
also kiss my cats or get too close to them, especially on my face because 9
times out of 10 I will get very itchy and get hives too. I am hoping and
expecting this to go away some day. "
And some comments about hypersensitivity to creams:
"I have happily used Vaseline throughout my withdrawal but just in the
last 2 weeks have found that it is no longer working for me. My skin
has started to feel hot and itchy after putting it on."
"The skin during rebound seems to be hypersensitive
and I feel certain that no external application at all is the least risky
for the skin. Use of soap and shampoo is not recommended because they wash out natural
wax on the skin. I explain that disinfectants are more effective for
sanitary purposes only*. "
Hypersensitivity is one of the longer lasting side effects of steroid withdrawal. it takes a long time, possibly years for the body to return to the state it was in before steroids. Until that time, those of us with TSW will experience hives and reactions to many things that we could previously tolerate.
Tuesday, 1 May 2012
ITSAN Website Up And Running
I just had to share the exciting news that the new ITSAN website is finally up and running!
Kelly Palace, the founder of the site and its predecessor, addictedskin.com, has channelled her own experiences with topical steroid addiction and subsequent healing, into creating a charity dedicated to helping and educating those affected by corticosteroid overuse and addiction. From small beginnings, she has created an international site, full of useful information and resources about steroid addiction and the adverse effects of steroid cream abuse.
ITSAN, the International Topical Steroid Addiction Network, will hopefully help and educate many thousands of people, and also show the medical establishment, who currently doubt the existence of steroid addiction, that Red Skin Syndrome is not only REAL, but it is affecting countless adults, children and babies worldwide. The site already has the backing of supportive and sympathetic doctors, but more needs to be done to educate doctors and dermatologists worldwide that prescribing repeat prescriptions of increasingly potent steroid creams is NOT the answer to skin problems like eczema and psoriasis.
Check out the site:
Itsan.org
Kelly Palace, the founder of the site and its predecessor, addictedskin.com, has channelled her own experiences with topical steroid addiction and subsequent healing, into creating a charity dedicated to helping and educating those affected by corticosteroid overuse and addiction. From small beginnings, she has created an international site, full of useful information and resources about steroid addiction and the adverse effects of steroid cream abuse.
ITSAN, the International Topical Steroid Addiction Network, will hopefully help and educate many thousands of people, and also show the medical establishment, who currently doubt the existence of steroid addiction, that Red Skin Syndrome is not only REAL, but it is affecting countless adults, children and babies worldwide. The site already has the backing of supportive and sympathetic doctors, but more needs to be done to educate doctors and dermatologists worldwide that prescribing repeat prescriptions of increasingly potent steroid creams is NOT the answer to skin problems like eczema and psoriasis.
Check out the site:
Itsan.org
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