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.
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