I noticed that the TSW rash changes over the course of the day. I suppose this is in response to things like the weather, environment and also my natural body rhythms. I thought I would give a brief overview of how my skin progresses on a typical day:
Early Morning: This is the worst time for me. I find mornings incredibly hard. When I wake up, I tend to sit up in bed and run my fingers over my face and neck to check for damage inflicted by fingernails in the night! I have a tube of moisturiser by the bed and dab some on my neck so I can move it. I go to the bathroom and look in the mirror. The skin is not particularly red in the morning, but it is very dry. The second my skin hits the air, it is as though crackle-glaze has been applied all round my mouth. The skin puckers and scales over. I will apply a greasy ointment or oil round the mouth area to smooth out the chapped skin.
Then I'm busy feeding and dressing everyone, so the skin has to wait. Just before I have to leave for the school run, I check in the mirror. The skin is usually chapping up again and starting to redden. I whack on more moisturiser and a bit of lip balm and head out.
Depending on the weather, my skin reacts on contact with the outside air. Today it was cold and cloudy and rainy. My skin felt burning hot on contact with the cold air. By the time I get back home though, my skin is usually acclimatising, ready for what I call the "Big Calm."
Mid Morning: Mid morning to early afternoon is a good time for my skin. It calms down during this phase of the day. I check the mirror every so often and dab on cream where needed, as it is easy to dry out. If I am out, I take a tube of cream with me. I often find that this is a good time of day to have a bath, as it gives the skin chance to recover and it is also a good time to relax with everyone out of the house.
Afternoon: The skin is pretty calm in the afternoon, despite most afternoons being busy and hectic. Afternoons are a premium time to get jobs done because I am feeling at my best. I feel a lot better doing the afternoon school run than the morning one. once the kids are home, there is no time to think about my skin. I will be busy for the next few hours.
Evening: Dryness and calm phases over with, the evening is the time when the redness kicks in. It is also the time that my asthma starts to play up. I usually take an antihistamine in the evening to relieve the worst symptoms, but my skin gets increasingly red. I think my histamine levels peak in the evening, because patches of rashes turn red and get hives in them, making the skin very itchy. This is also the time of day when the skin starts to ooze.
Night: By the time I go to bed, the skin is at its reddest. It is not usually that dry, but it is starting to get oozy and wet at this point, especially on my neck. Getting comfortable in bed is tricky, made worse by the fact that my face and neck ooze on contact with the pillow. I usually lie awake for hours, followed by a fitful sleep between midnight and 3 and then a deep sleep till 7:30.
So in conclusion, on a average day, I am dry, then calm, then red.
Tuesday 26 February 2013
Monday 25 February 2013
Why I Hate Going To Bed (photos)
Last night when I was getting ready to go to bed, I just stood for a minute or two at the foot of the bed looking at it with absolute dread.
Why?
Because bedtime is hell time.
During the day, I am up and about and the air is getting to my skin. If it dries out, I dab a bit of moisturiser and carry on.
At night, my skin oozes terribly. The moment my face touches the pillow, it starts to leach fluid. My neck and chest start to ooze and soon I am a big oozy mess. My neck crease and the area behind my ear get all wet and sticky. Sleeping is difficult, to say the least.
Last night I managed to fluff the pillow in such a way so that my neck and face were exposed to as much air as possible. But then I fell asleep and then I woke up buried under the duvet in a sticky mess.
The lack of sunshine is having a detrimental effect on my skin. I thought I'd post a few photos of my flare, which has now spread to parts of the body I previously thought healed.
This is an oozy wet patch on my face. It alternates between oozy and dry and crusty.
This is a messy patch by my eye.
Look how dry my arm is! Dry and arid like the desert.
This is my leg that was previously healed and clear. This patch is really itchy.
Sorry about the fat belly picture, but I wanted to show that even my poor old tummy is rashy too!
Lastly, this is my duvet, covered in bloodstains and ooze. It's headed for the wash. I get through LOTS of washing.
So what am I to conclude about this? I am 15 months into withdrawal and seem to be getting worse! I had a horrible moment last night where it crossed my mind that maybe the steroid damage was permanent and maybe my blood vessels are like this forever. No, I still think I will heal, just like all the other thousands of Dr Rapaports patients.
I have no idea why I'm flaring though. It doesn't seem to be following the classic withdrawal pattern anymore. I have been flaring over a week and NEED A BREAK PLEASE!
I went shopping and managed to bump into everyone I knew today. I bumped into a really close friend and I was moaning about my skin. "You're glowing", she said.
That's why she is my friend.
Why?
Because bedtime is hell time.
During the day, I am up and about and the air is getting to my skin. If it dries out, I dab a bit of moisturiser and carry on.
At night, my skin oozes terribly. The moment my face touches the pillow, it starts to leach fluid. My neck and chest start to ooze and soon I am a big oozy mess. My neck crease and the area behind my ear get all wet and sticky. Sleeping is difficult, to say the least.
Last night I managed to fluff the pillow in such a way so that my neck and face were exposed to as much air as possible. But then I fell asleep and then I woke up buried under the duvet in a sticky mess.
The lack of sunshine is having a detrimental effect on my skin. I thought I'd post a few photos of my flare, which has now spread to parts of the body I previously thought healed.
Lastly, this is my duvet, covered in bloodstains and ooze. It's headed for the wash. I get through LOTS of washing.
So what am I to conclude about this? I am 15 months into withdrawal and seem to be getting worse! I had a horrible moment last night where it crossed my mind that maybe the steroid damage was permanent and maybe my blood vessels are like this forever. No, I still think I will heal, just like all the other thousands of Dr Rapaports patients.
I have no idea why I'm flaring though. It doesn't seem to be following the classic withdrawal pattern anymore. I have been flaring over a week and NEED A BREAK PLEASE!
I went shopping and managed to bump into everyone I knew today. I bumped into a really close friend and I was moaning about my skin. "You're glowing", she said.
That's why she is my friend.
Friday 22 February 2013
Kübler-Ross and the Five Stages of Grief
The Itsan forum throws up some interesting topics of conversation, but one particular thread a few days ago piqued my interest. One of the forum members likened the steroid withdrawal process to the five stages of grief that people undergo when experiencing a stressful or life-changing event.
The stages are:
1. Denial: When I used steroids for my eczema, I could see that my skin was getting worse and that the fine red rash all over my body looked very different to the eczema I had experienced as a child. I took stronger and stronger meds without thinking there could be a link to my worsening condition. Even when I did finally stop steroids, there was a strong element of doubt as to whether my new regime would be successful. I often questioned whether the rebound flare was just worsening eczema from stopping the steroids. Many people read about Red Skin Syndrome and refuse to believe that they have it, even though they may be using steroid creams every day and display all the classic signs.
2. Anger: Once I understood what was happening to my body, I was angry. I was angry at my doctor for repeating my prescriptions without question, I was angry at the big pharmaceutical companies profiting from steroid cream sales and I was angry at myself for continuing to blindly use steroids for so many years without question. I was also pretty angry at all the people with nice skin-it just didn't seem fair! Likewise many other get angry when they come off the steroids and wish to sue or take action against those responsible. This militant attitude can have its benefits though. I channelled my energy and anger into creating this blog to warn people about steroids and prevent others from suffering as I have done.
3.Bargaining: In my case, bargaining was trying to find ways to drastically shorten the healing period. I tried various supplements, cutting out foods and different types of creams and ointments. At the end of the day, the evidence shows that unfortunately, at the present time, there is no known way to shorten TSW. You just have to let it run its course. This doesn't stop people from trying various methods to heal quicker though. The Itsan forum is full of anecdotes from individuals who have tried all sorts of remedies, from dietary changes to more drastic sauna treatments and alternative therapies. None of these has produced miraculous healing in anyone yet though, and the people who have healed completely never used any of these methods.
4. Depression: This is a biggie. I have felt rock-bottom many times during this hell of withdrawal. Usually it is because I am undergoing a flare after a period of good skin. An unexpected flare turn good skin to mush and turns hope into despair. Many have found the process of TSW so traumatic that they fear potential post traumatic stress disorder once it is over. Panic attacks are common, and despondency can push one to the limit. I am so thankful for the Itsan forum, which is a great source of encouragement when I am laid low.
5. Acceptance: OK, lets get on with it. I know what lon-term use of topical steroids have done to my body. I know that getting angry about it won't help and I know that there are no "miracle cures" at the present time. Getting sad about it doesn't help. It makes it worse. So I accept I have TSW. I am going to do my best to live with it and try and live my life as normally as possible.
The thing is that I usually slip into the previous stages, particularly when I am having a tough time!
What stage are you at?
The stages are:
1. Denial: When I used steroids for my eczema, I could see that my skin was getting worse and that the fine red rash all over my body looked very different to the eczema I had experienced as a child. I took stronger and stronger meds without thinking there could be a link to my worsening condition. Even when I did finally stop steroids, there was a strong element of doubt as to whether my new regime would be successful. I often questioned whether the rebound flare was just worsening eczema from stopping the steroids. Many people read about Red Skin Syndrome and refuse to believe that they have it, even though they may be using steroid creams every day and display all the classic signs.
2. Anger: Once I understood what was happening to my body, I was angry. I was angry at my doctor for repeating my prescriptions without question, I was angry at the big pharmaceutical companies profiting from steroid cream sales and I was angry at myself for continuing to blindly use steroids for so many years without question. I was also pretty angry at all the people with nice skin-it just didn't seem fair! Likewise many other get angry when they come off the steroids and wish to sue or take action against those responsible. This militant attitude can have its benefits though. I channelled my energy and anger into creating this blog to warn people about steroids and prevent others from suffering as I have done.
3.Bargaining: In my case, bargaining was trying to find ways to drastically shorten the healing period. I tried various supplements, cutting out foods and different types of creams and ointments. At the end of the day, the evidence shows that unfortunately, at the present time, there is no known way to shorten TSW. You just have to let it run its course. This doesn't stop people from trying various methods to heal quicker though. The Itsan forum is full of anecdotes from individuals who have tried all sorts of remedies, from dietary changes to more drastic sauna treatments and alternative therapies. None of these has produced miraculous healing in anyone yet though, and the people who have healed completely never used any of these methods.
4. Depression: This is a biggie. I have felt rock-bottom many times during this hell of withdrawal. Usually it is because I am undergoing a flare after a period of good skin. An unexpected flare turn good skin to mush and turns hope into despair. Many have found the process of TSW so traumatic that they fear potential post traumatic stress disorder once it is over. Panic attacks are common, and despondency can push one to the limit. I am so thankful for the Itsan forum, which is a great source of encouragement when I am laid low.
5. Acceptance: OK, lets get on with it. I know what lon-term use of topical steroids have done to my body. I know that getting angry about it won't help and I know that there are no "miracle cures" at the present time. Getting sad about it doesn't help. It makes it worse. So I accept I have TSW. I am going to do my best to live with it and try and live my life as normally as possible.
The thing is that I usually slip into the previous stages, particularly when I am having a tough time!
What stage are you at?
Thursday 21 February 2013
Talking About Inhalers Again...
Sorry to harp on about inhalers all the time, but I found some useful info online this week that I wanted to share.
This article is about a child who used the same inhaler as me (seretide/advair) and ended up with a steroid-induced rash around his mouth. When he stopped the inhaler, the rash went away. At the bottom of the article there are about 8 different Pubmed articles by experts on the subject, although it is also just as easy to Google "inhalers and perioral dermatitis". Perioral dermatitis is a type of rash around the mouth commonly caused by steroid medication.
Suffice to say that this article worried me, particularly as it involved my inhaler and also because the worst area of my skin at the moment is the are surrounding the mouth. Coincidence? I have no idea.
Anyway, after a month of dropping every third puff, I have now lowered the dose to every other puff. I also make the point of rinsing my mouth thoroughly after a puff to remove all steroid traces from my mouth and throat. I seem to be doing OK, but I'm still taking it really slowly. After about a month of this, I will see where I go from there. I would sincerely love to be completely steroid free.
I am not sure what impact, if any, the steroid inhaler is having on my TSW. It is a low dose, but steroid addiction is due to the cumulative result of steroid use, so surely every time I puff, I am adding to the problem.
It's a scary subject because obviously, my first priority is breathing. I have no intention of doing anything dangerous. The previous times I tried to quit the inhaler I failed because my chest got congested and I could taste blood when I coughed.
However, I'm not sure that I can completely heal if I am using steroids, which leaves me in a kind of limbo, I suppose. Then again, Dr Fukaya, a Japanese dermatologist who has studied the science behind steroid addiction says that inhaled steroids do not contribute to topical steroid addiction. I guess this leaves me with more questions than answers yet again.
This article is about a child who used the same inhaler as me (seretide/advair) and ended up with a steroid-induced rash around his mouth. When he stopped the inhaler, the rash went away. At the bottom of the article there are about 8 different Pubmed articles by experts on the subject, although it is also just as easy to Google "inhalers and perioral dermatitis". Perioral dermatitis is a type of rash around the mouth commonly caused by steroid medication.
Suffice to say that this article worried me, particularly as it involved my inhaler and also because the worst area of my skin at the moment is the are surrounding the mouth. Coincidence? I have no idea.
Anyway, after a month of dropping every third puff, I have now lowered the dose to every other puff. I also make the point of rinsing my mouth thoroughly after a puff to remove all steroid traces from my mouth and throat. I seem to be doing OK, but I'm still taking it really slowly. After about a month of this, I will see where I go from there. I would sincerely love to be completely steroid free.
I am not sure what impact, if any, the steroid inhaler is having on my TSW. It is a low dose, but steroid addiction is due to the cumulative result of steroid use, so surely every time I puff, I am adding to the problem.
It's a scary subject because obviously, my first priority is breathing. I have no intention of doing anything dangerous. The previous times I tried to quit the inhaler I failed because my chest got congested and I could taste blood when I coughed.
However, I'm not sure that I can completely heal if I am using steroids, which leaves me in a kind of limbo, I suppose. Then again, Dr Fukaya, a Japanese dermatologist who has studied the science behind steroid addiction says that inhaled steroids do not contribute to topical steroid addiction. I guess this leaves me with more questions than answers yet again.
Wednesday 20 February 2013
Stress is Bad For Your Skin
This latest flare has had me freaking out and worrying about the cause. It is true that flares don't necessarily have a cause, but sometimes a stressful event or eating a particular type of food can precipitate a flare up. In my case, I believe the most recent flare was due to a rather stressful incident I had a few days ago, which I spoke about on my other blog. The incident really upset me and I was crying most of the day, which likely brought about the flare.
There have been various experiences on the Itsan forum where people have had periods of good skin, but then experienced a stressful event which brought on a very bad skin reaction. One member of Itsan had been completely healed, but when a close friend died, her rashes started up again.
I'm not a scientist, but this doesn't stop me theorising about what is going on. I read an interesting article on Wikipedia about cortisol and its role in the body. Cortisol is the body's own natural hydrocortisone and is made in the adrenal glands. Cortisol is produced when the body is stressed. The article states:
"Cortisol is released in response to stress, sparing available glucose for the brain, generating new energy from stored reserves, and diverting energy away from low-priority activities (such as the immune system) in order to survive immediate threats or prepare for the exertion of rising to a new day."
OK, so this leads me to my theory. When we are stressed, our body makes hydrocortisone. Cortisol affects the blood vessels. Now maybe this causes us to flare because the blood vessels react the same way than they would to steroid cream. Another theory is related to the fact that cortisol impacts on the immune system. This could lead to skin problems too. I myself have noticed that when I get stressed I get coldsores.
This leads me to a lot of interesting questions that I don't have the answer to. I know my body makes its own hydrocortisone, so do elevated levels of cortisol affect TSW? Seems like a good excuse to chill out and relax as much as possible. I wonder if anxious individuals are slower to heal? What about exercise? Presumably, any kind of physical activity would get the adrenaline pumping, but then again, exercise also relaxes the body. Interestingly, this is what Wikipedia says:
Factors generally reducing cortisol levels
So according to that list, I should listen to lots of music, dance around a lot, give up coffee (no!!!) and laugh a lot. (Not quite sure what to make of the weird one about young female pigs mating. Does that apply to humans too?)
HAHAHAHAHAHAHA!!!!! I feel so much better now.
(BTW a massive thank you to all the Itsan forumites who gave me a virtual hug when I was feeling lousy yesterday. The forum is an absolute lifeline to those suffering.)
There have been various experiences on the Itsan forum where people have had periods of good skin, but then experienced a stressful event which brought on a very bad skin reaction. One member of Itsan had been completely healed, but when a close friend died, her rashes started up again.
I'm not a scientist, but this doesn't stop me theorising about what is going on. I read an interesting article on Wikipedia about cortisol and its role in the body. Cortisol is the body's own natural hydrocortisone and is made in the adrenal glands. Cortisol is produced when the body is stressed. The article states:
"Cortisol is released in response to stress, sparing available glucose for the brain, generating new energy from stored reserves, and diverting energy away from low-priority activities (such as the immune system) in order to survive immediate threats or prepare for the exertion of rising to a new day."
OK, so this leads me to my theory. When we are stressed, our body makes hydrocortisone. Cortisol affects the blood vessels. Now maybe this causes us to flare because the blood vessels react the same way than they would to steroid cream. Another theory is related to the fact that cortisol impacts on the immune system. This could lead to skin problems too. I myself have noticed that when I get stressed I get coldsores.
This leads me to a lot of interesting questions that I don't have the answer to. I know my body makes its own hydrocortisone, so do elevated levels of cortisol affect TSW? Seems like a good excuse to chill out and relax as much as possible. I wonder if anxious individuals are slower to heal? What about exercise? Presumably, any kind of physical activity would get the adrenaline pumping, but then again, exercise also relaxes the body. Interestingly, this is what Wikipedia says:
Factors generally reducing cortisol levels
- Magnesium supplementation decreases serum cortisol levels after aerobic exercise,[69][70] but not after resistance training.[71]
- Omega-3 fatty acids have a dose-dependent effect[72] in slightly reducing cortisol release influenced by mental stress,[73] suppressing the synthesis of interleukin-1 and -6 and enhancing the synthesis of interleukin-2; the former promotes higher CRH release. Omega-6 fatty acids, on the other hand, have an inverse effect on interleukin synthesis.[citation needed]
- Music therapy can reduce cortisol levels in certain situations.[74]
- Massage therapy can reduce cortisol.[75]
- Laughing, and the experience of humour, can lower cortisol levels.[76]
- Soy-derived phosphatidylserine interacts with cortisol; the correct dose, however, is unclear.[77][78]
- Black tea may hasten recovery from a high-cortisol condition.[79][80][non-primary source needed]
- Regular dancing has been shown to lead to significant decreases in salivary cortisol concentrations.[81]
[edit] Factors generally increasing cortisol levels
- Caffeine may increase cortisol levels.[82]
- Sleep deprivation[83]
- Intense (high VO2 max) or prolonged physical exercise stimulates cortisol release to increase gluconeogenesis and maintain blood glucose.[84] Proper nutrition[85] and high-level conditioning[86] can help stabilize cortisol release.
- The Val/Val variation of the BDNF gene in men, and the Val/Met variation in women, are associated with increased salivary cortisol in a stressful situation.[87]
- Hypoestrogenism and melatonin supplementation increase cortisol levels in postmenopausal women.[88]
- Burnout is associated with higher cortisol levels.[89]
- Severe trauma or stressful events can elevate cortisol levels in the blood for prolonged periods.[90][91]
- Subcutaneous adipose tissue regenerates cortisol from cortisone.[92]
- Anorexia nervosa may be associated with increased cortisol levels.[93]
- The serotonin receptor gene 5HTR2C is associated with increased cortisol production in men.[94]
- Commuting increases cortisol levels relative to the length of the trip, its predictability and the amount of effort involved.[95]
- Stimuli associated with sexual intercourse can increase cortisol levels in gilts (a young female pig that has not produced her first litter).[96]
- Severe calorie restriction causes elevated baseline levels of cortisol.[97]
So according to that list, I should listen to lots of music, dance around a lot, give up coffee (no!!!) and laugh a lot. (Not quite sure what to make of the weird one about young female pigs mating. Does that apply to humans too?)
HAHAHAHAHAHAHA!!!!! I feel so much better now.
(BTW a massive thank you to all the Itsan forumites who gave me a virtual hug when I was feeling lousy yesterday. The forum is an absolute lifeline to those suffering.)
Tuesday 19 February 2013
Still Crusty....(photo)
Feeling really yukky today because I'm still crusty round my mouth. The kids are off school and its a lovely sunny day and I can't go anywhere because I look like a freak.
Truth is, steroid withdrawal is LONG process and it has a habit of lifting you up impossibly high and then dropping you down into a seemingly bottomless pit.
I am not posting this picture to discourage anyone, but those considering embarking on steroid cream withdrawal need to realise that it is not a quick fix. I can't wait to post some healed photos on here; my skin is obviously working overtime right now to heal itself. I still consider all this flaking a good sign that my skin is working hard to heal' a bit like a natural chemical peel, as it were!
My sympathy goes out to all the other red-skinners suffering. I wish I could shout out "Yay! 15 months and I'm healed!", but it looks like it could be a while yet.
Hang in everyone.
I am not posting this picture to discourage anyone, but those considering embarking on steroid cream withdrawal need to realise that it is not a quick fix. I can't wait to post some healed photos on here; my skin is obviously working overtime right now to heal itself. I still consider all this flaking a good sign that my skin is working hard to heal' a bit like a natural chemical peel, as it were!
My sympathy goes out to all the other red-skinners suffering. I wish I could shout out "Yay! 15 months and I'm healed!", but it looks like it could be a while yet.
Hang in everyone.
Monday 18 February 2013
Crusting and Oozing Again! (photo)
A couple of days ago I thought that my face was almost healed. The skin was a lot smoother and some of the troublesome areas were starting to improve.
Unfortunately, as is often the case with TSW, this was not to last.
Last night when I was lying in bed, I seemed to have trouble with the nerves on the left side of my face. The skin felt tight and sore. The skin on my chin kept leaching fluid and it was hard to get comfortable.
When I woke up, the bottom half of my face was covered in fine yellow crust that had set hard. Ugh.
I have found, from trial and error, that when the skin is like this, it is best not to moisturise, even though this seems counter-intuitive. The best remedy for me is to make up some domeboro solution or epsom salts in water and apply to a cotton wool pad, gently dabbing the face. It is important not to pull at the crusty areas, as the area underneath will be wet and will only crust away again. The best thing to do is dab and let it dry and then a few hours later, dab again. The astringent effect of the domeboro will dry up the ooze and stop the crusting.
I am nearly 15 months into TSW, but used strong steroids on my face, so it is understandable that the skin is having a tough time getting itself right. I believe that any change, even the icky ooze, is a sign that the skin is doing something to right itself and I still think full healing is not far away. The rest of my body is doing great, with much of the skin back to normal. My palms, which have given me a lot of grief over the past month or so are finally going back to normal.
There is no way I will let this setback get me down. I am too close to the finish line!
Unfortunately, as is often the case with TSW, this was not to last.
Last night when I was lying in bed, I seemed to have trouble with the nerves on the left side of my face. The skin felt tight and sore. The skin on my chin kept leaching fluid and it was hard to get comfortable.
When I woke up, the bottom half of my face was covered in fine yellow crust that had set hard. Ugh.
I have found, from trial and error, that when the skin is like this, it is best not to moisturise, even though this seems counter-intuitive. The best remedy for me is to make up some domeboro solution or epsom salts in water and apply to a cotton wool pad, gently dabbing the face. It is important not to pull at the crusty areas, as the area underneath will be wet and will only crust away again. The best thing to do is dab and let it dry and then a few hours later, dab again. The astringent effect of the domeboro will dry up the ooze and stop the crusting.
I am nearly 15 months into TSW, but used strong steroids on my face, so it is understandable that the skin is having a tough time getting itself right. I believe that any change, even the icky ooze, is a sign that the skin is doing something to right itself and I still think full healing is not far away. The rest of my body is doing great, with much of the skin back to normal. My palms, which have given me a lot of grief over the past month or so are finally going back to normal.
There is no way I will let this setback get me down. I am too close to the finish line!
Sunday 17 February 2013
Touching Lives
When I first decided to write this blog, I wasn't sure what would become of it. I wasn't even sure that anyone would even read it, but it was something that I felt I had to do, because so little had been documented about steroid withdrawal.
Back then, over a year ago now, I had no idea whether my efforts to be free from steroid creams would work, but whatever happened, I knew I had to record the outcome, whether it was good or bad. it was like a scientific experiment, but on myself.
Thankfully, the outcome has been positive. I am now at a stage where I can live a normal life and my skin is almost healed. Many new blogs have sprung up to create a wonderful blog network where people can get answers to their many questions about topical steroid withdrawal. Hopefully, our collective blogging experience will provide future generations with a more rounded out view of how this condition progresses and what to expect.
However, the biggest thrill I have had from blogging has been connecting with others. I have had emails from all over the world from grateful individuals telling me that the blog has helped them in one way or another. It is wonderful to feel that I have been able to help people by writing this. It has also been wonderful to have the privilege of meeting other red-skinners face to face to mutually encourage one another.
It feels like being part of something much bigger. Hopefully the medical community will catch onto the idea that steroid creams should be regulated and prescribed with more caution and that will benefit everyone.
Thanks everyone for their kind messages and comments that inspire me and keep me going.
Back then, over a year ago now, I had no idea whether my efforts to be free from steroid creams would work, but whatever happened, I knew I had to record the outcome, whether it was good or bad. it was like a scientific experiment, but on myself.
Thankfully, the outcome has been positive. I am now at a stage where I can live a normal life and my skin is almost healed. Many new blogs have sprung up to create a wonderful blog network where people can get answers to their many questions about topical steroid withdrawal. Hopefully, our collective blogging experience will provide future generations with a more rounded out view of how this condition progresses and what to expect.
However, the biggest thrill I have had from blogging has been connecting with others. I have had emails from all over the world from grateful individuals telling me that the blog has helped them in one way or another. It is wonderful to feel that I have been able to help people by writing this. It has also been wonderful to have the privilege of meeting other red-skinners face to face to mutually encourage one another.
It feels like being part of something much bigger. Hopefully the medical community will catch onto the idea that steroid creams should be regulated and prescribed with more caution and that will benefit everyone.
Thanks everyone for their kind messages and comments that inspire me and keep me going.
Thursday 14 February 2013
Solve Eczema
Today I want to briefly talk about a great site called Solve Eczema. The site was created by a family who wanted cure their child's eczema by looking at the root cause, or trigger of the problem. In their particular case, the baby was reacting to detergents, which unfortunately are found everywhere, including washing powder, washing up liquid, cleaning products, bubble bath, shampoo and toothpaste! Obviously, making the switch to safe alternatives was not easy, but they saw a dramatic improvement in their baby's skin after converting to soap, rather than detergent products.
We may think that soaps and detergents are the same, but they are not. Soaps are formed from a chemical reaction of lye and fat, which creates glycerine. Detergents that we use today were created during World War 2, when the ingredients used to make soap were in short supply. By using petroleum as an ingredient, modern detergents were developed and gained popularity, despite the fact that they can be harmful to health, permeating skin membrane or causing breathing problems, such as asthma.
The Solve Eczema site claims that as many as 60% of all eczema cases may be caused by detergent sensitivity and recommend that sufferers try quitting detergents to see how they get on.
I find this approach refreshing because it gets to the root of the problem. I'm not saying that all eczema is due to detergent allergy, but my point is that by searching for a root cause and eliminating it rather than covering over the problem with "magic creams" seems to be a much more sensible way of dealing with eczema in general.
Parents should consider diet, environment and all possible allergy triggers rather than automatically going down the steroid route. The latter is easier of course, and offers immediate results, but may have nasty long term implications.
We may think that soaps and detergents are the same, but they are not. Soaps are formed from a chemical reaction of lye and fat, which creates glycerine. Detergents that we use today were created during World War 2, when the ingredients used to make soap were in short supply. By using petroleum as an ingredient, modern detergents were developed and gained popularity, despite the fact that they can be harmful to health, permeating skin membrane or causing breathing problems, such as asthma.
The Solve Eczema site claims that as many as 60% of all eczema cases may be caused by detergent sensitivity and recommend that sufferers try quitting detergents to see how they get on.
I find this approach refreshing because it gets to the root of the problem. I'm not saying that all eczema is due to detergent allergy, but my point is that by searching for a root cause and eliminating it rather than covering over the problem with "magic creams" seems to be a much more sensible way of dealing with eczema in general.
Parents should consider diet, environment and all possible allergy triggers rather than automatically going down the steroid route. The latter is easier of course, and offers immediate results, but may have nasty long term implications.
Tuesday 12 February 2013
The Patients
Hello blog readers!
I have a little job for you all today.
I want you to go and visit www.itsan.org and click on the tab that says "Stories and Photos".
Then I want you to look at the photos under each name in the list.
I wish EVERY dermatologist and doctor could see these pictures. It would make them think twice about prescribing steroids so readily. There is so much unnecessary suffering caused by over prescribed steroid creams.
I have spent the last 15 years or so suffering with rashy skin that was PREVENTABLE. I can't get those years back. I have very few photos of me in my 20's and early 30's because I was embarrassed how my skin looked. It should have been the prime of my life. I just hope enough people read this blog that I can prevent the same happening to someone else.
By the time my skin has fully healed I will be nearly 40. When my skin is good I will be taking LOTS of photos to compensate for my "lost skin" years.
It shouldn't have happened to me.
It shouldn't happen to babies and young kids.
It shouldn't happen to anybody.
I have a little job for you all today.
I want you to go and visit www.itsan.org and click on the tab that says "Stories and Photos".
Then I want you to look at the photos under each name in the list.
I wish EVERY dermatologist and doctor could see these pictures. It would make them think twice about prescribing steroids so readily. There is so much unnecessary suffering caused by over prescribed steroid creams.
I have spent the last 15 years or so suffering with rashy skin that was PREVENTABLE. I can't get those years back. I have very few photos of me in my 20's and early 30's because I was embarrassed how my skin looked. It should have been the prime of my life. I just hope enough people read this blog that I can prevent the same happening to someone else.
By the time my skin has fully healed I will be nearly 40. When my skin is good I will be taking LOTS of photos to compensate for my "lost skin" years.
It shouldn't have happened to me.
It shouldn't happen to babies and young kids.
It shouldn't happen to anybody.
Monday 11 February 2013
Photos at Almost 15 Months
I am hearing lots of healing stories at the moment, which are really encouraging to me. Juliana, who writes one of the first blogs I ever read on TSW is almost healed now at 22 months in and some members of the Itsan forum are also reporting healed skin.
Anyway, I thought I would post a few progress photos. It is snowing outside again so I am stuck in!
So firstly, my face. The skin is looking quite good here although still not quite normal colour yet. It is not too problematic, more dry than anything, which is easily remedied with a little moisturiser.I find that my skin goes blotchy if I sweat too much, but no fear of that in this cold weather!
My hand looks OK, but the skin looks a bit wrinkly, like an old lady's hand, especially around the finget joints! All in all, not too bad though.
Blotchy neck photo! My neck has been a problem area and continues to be so, especially as i have been wrapping the duvet tight round my neck, which makes it sweat. It still oozes a bit and flakes in the mornings. This is probably my worst area right now.
Looking at the photos I am quite happy. I can see big improvements and I think if we do get any sun, it should zap the last of the rashes. TSW is a fickle beast though, and nothing is certain. Sure beats slapping on loads of steroid cream though!
On a downside, my asthma is still really changeable. A few days ago, I woke up with a really clear chest and was puffing above my normal peak flow. Today I woke up wheezy and couldn't even manage 250, which I'm sure means I am technically dead! I think it is definitely allergy related and I am looking out for patterns and triggers. I'm still doing plenty of lung exercises, but I guess if the cause is allergic, then doing all the lung exercises in the world won't help with that. Any idea of quitting the inhalers seems like a fantasy at the moment and I am not pushing it at all.
Anyway, I thought I would post a few progress photos. It is snowing outside again so I am stuck in!
Looking at the photos I am quite happy. I can see big improvements and I think if we do get any sun, it should zap the last of the rashes. TSW is a fickle beast though, and nothing is certain. Sure beats slapping on loads of steroid cream though!
On a downside, my asthma is still really changeable. A few days ago, I woke up with a really clear chest and was puffing above my normal peak flow. Today I woke up wheezy and couldn't even manage 250, which I'm sure means I am technically dead! I think it is definitely allergy related and I am looking out for patterns and triggers. I'm still doing plenty of lung exercises, but I guess if the cause is allergic, then doing all the lung exercises in the world won't help with that. Any idea of quitting the inhalers seems like a fantasy at the moment and I am not pushing it at all.
Wednesday 6 February 2013
A to Z of Corticosteroid Withdrawal: Red Skin
R is for Red Skin
The rebound following cessation of steroid creams has been given many names and titles, but one of the most often used is "Red Skin Syndrome", which was a term coined by Dr Marvin Rapaport when he treated patients with the condition. He has, to date, treated over 2000 people with RSS and every single patient experienced the typical red skin associated with this condition.
When I went to London for an ITSAN meetup last month, one of the things that really hit me was how alike we all looked. We all had red faces and it was so clear that we were all suffering from the same thing and that this was clearly NOT eczema.
The red skin is caused by the nitric oxide in the blood vessels.Steroid creams suppress the blood vessels and artificially blanch the colour of the skin. By removing this suppressant, the vessels widen excessively and allow blood to rush close to the surface of the skin, causing a red appearance. The level of redness is sometimes quite shocking and takes a long time to go away.
Here are some pictures of people with red skin caused by steroid withdrawal:
The rebound following cessation of steroid creams has been given many names and titles, but one of the most often used is "Red Skin Syndrome", which was a term coined by Dr Marvin Rapaport when he treated patients with the condition. He has, to date, treated over 2000 people with RSS and every single patient experienced the typical red skin associated with this condition.
When I went to London for an ITSAN meetup last month, one of the things that really hit me was how alike we all looked. We all had red faces and it was so clear that we were all suffering from the same thing and that this was clearly NOT eczema.
The red skin is caused by the nitric oxide in the blood vessels.Steroid creams suppress the blood vessels and artificially blanch the colour of the skin. By removing this suppressant, the vessels widen excessively and allow blood to rush close to the surface of the skin, causing a red appearance. The level of redness is sometimes quite shocking and takes a long time to go away.
Here are some pictures of people with red skin caused by steroid withdrawal:
You can see that the symptoms can be every severe and interestingly, the redness can have a clear demarcation line.You can see on the foot photo that the redness does not affect the toes and heels of the patient. It is also common for the redness to stop at the sleeve, causing the classic "red sleeve" sign of steroid withdrawal. The lady in the photo on the right has white fingers in contrast to her red hands.
To illustrate the fact that this is completely reversible with time, here is a photo of the same lady, in the same pose, now, after over a year off steroids (from the patients section of Itsan.org):
With time, the nitric oxide levels get lower and the blood vessels go back to normal and stop dilating. This can take several years.
Here are a few comments about red skin from the members of the ITSAN forum:
"Today marks a milestone of 5 months recovering from cortisone steroids that ravaged by body, destroyed my adrenal system and sent my skin bright red and dry.
Since stopping use of cortisone steroids, my body has been the victim of a horrendous recovery; bright red skin, very very very dry cracked skin, hair loss, swelling, insomnia and much much more."
"...I used low potency for 8 months leading to TSW (OTC hydrocortisone mostly) and developed full body tomato red skin after about 3 months. First it was localized and severely itchy and dry and red on the places I used but eventually the red blotches all merged into uniform red."
"I never had the actual red skin before withdrawing, I had cortisone induced eczema with pimples that looked like acne + I had the oozing (from my armpits + upper legs+ fingers) and itching really badly. I only have red skin since I went into the withdrawal. Also, I only started to show the red sleeve on my wrists from about 3 months in TSW because my hands were the worst at the beginning and they oozed and my palms were red too."
The worst thing about the redness is that it is embarrassing and makes us feel self conscious. I remember last summer, I felt quite happy to see that a lot of people were slightly red from catching the sun and so I didn't feel so out of place!
As distressing as it is, many thousands of Dr Rapaport, Dr Fukaya and Dr Sato's patients have seen it go away eventually. I am more pink than red now, so I'm optimistic.
Tuesday 5 February 2013
The Urge to Scratch
My skin is coming out of the wet, red phase and going into the dry phase, which is a lot easier to manage. The only problem with the dryness is that it does tend to make the skin very itchy and some mornings I wake up to find that I have clawed my face or my arms and left red marks. To counteract this, I take an antihistamine before bed, add a layer of moisturiser and also wear socks on my hands to stop myself scratching.
Every time I woke up in the night last night, the socks were back off again and I would inevitably find myself scratching away at my skin. I would dutifully place the socks back on again, but to no avail. One of the socks had a small hole in it and my the time I woke up, my busy fingers had worked the small hole into a hole large enough to fit my entire finger through so I could happily scratch away during my sleep! Luckily my face did not sustain any major damage, although it did feel a little tight. Thankfully, my neck ooze has stopped for the time being. With a quick slick of moisturizer, I was set for the day. The sun is out today and my front room gets the full sun, so I will be lying down on the rug to make sure I get some rays!
On the asthma front-good news. When I woke up this morning, I wasn't wheezy! This has to be a first! I am currently dropping every third puff of seretide. So far so good, although I won't consider dropping further until my peak flow is more stable. it still fluctuates between 250 and 300.
Every time I woke up in the night last night, the socks were back off again and I would inevitably find myself scratching away at my skin. I would dutifully place the socks back on again, but to no avail. One of the socks had a small hole in it and my the time I woke up, my busy fingers had worked the small hole into a hole large enough to fit my entire finger through so I could happily scratch away during my sleep! Luckily my face did not sustain any major damage, although it did feel a little tight. Thankfully, my neck ooze has stopped for the time being. With a quick slick of moisturizer, I was set for the day. The sun is out today and my front room gets the full sun, so I will be lying down on the rug to make sure I get some rays!
On the asthma front-good news. When I woke up this morning, I wasn't wheezy! This has to be a first! I am currently dropping every third puff of seretide. So far so good, although I won't consider dropping further until my peak flow is more stable. it still fluctuates between 250 and 300.
Friday 1 February 2013
Stopping to Say "Thank You"
It is easy to forget to say "Thank You". Sometimes we need reminding! Today on the Itsan forum, Kelly (the founder) asked if as many people as possible could write a message of thanks to Dr Marvin Rapaport MD for his work and research on steroid addiction and withdrawal. Dr Rapaport is a doctor who has swum against the tide of popular medical opinion to publish his findings on steroid addiction. He has helped thousands of patients to successfully quit steroid creams and regain healed skin.
I have never met Dr Rapaport. He lives in Beverly Hills, California and I live a whole world away in a small town in the West Midlands here in the UK. However, his work and research have strongly influenced the way that I view steroid creams. I truly hope that in time, my skin will heal completely from this steroid-induced eczema.
So....here is what I would like to say to Dr Rap!
Dear Dr Rapaport,
I would like to thank you for your research and studies into topical steroid addiction. I first read your papers back in November 2011 and reading them changed my whole perception of steroid creams. For the previous 15 years, I have viewed steroid creams as a magical "fix" to my eczema and applied them in increasing doses. It's funny; I noticed my skin getting worse and the "eczema" spreading but never thought that it could have been the steroids causing the problem. Of course, it all seems so obvious now.
I quit the creams after I read the article and have been in withdrawal for almost 15 months. In that time, I have been fortunate to meet with others suffering from the same condition. The similarities in our skin were shocking. After seeing many pictures of people going through this, there is no doubt in my mind that this is steroid induced. I now understand why you refer to us as the "red people".
It must be hard for you to meet with so much scepticism from the medical profession and your fellow doctors. It must be frustrating when you see dermatologists continue to prescribe increasing doses of potent steroids. But be assured that your work has helped many and continues to have far-reaching influence. For example, I live in the UK. I have never met you, but have benefited from your research. I now have my own blog on the subject which has, in turn, helped many others around the world. My blog has around 600 hits a day; all people searching for answers.
As more people awaken to the dangers of steroids, we can spread the word even more, recording our progress in photos, creating a portfolio of proof that will be difficult for doctors to deny. I am confident that one day, perceptions about steroid creams WILL change and that is all thanks to you and doctors like you.
So thank you, Dr Rapaport. Continue your good work knowing how much it means to patients on a personal level, patients like me. Thanks to your research I have the hope of having normal skin again and enjoying life to the full. please continue to support us and know that we appreciate everything you have done to help us.
Your appreciatively,
Louise
I have never met Dr Rapaport. He lives in Beverly Hills, California and I live a whole world away in a small town in the West Midlands here in the UK. However, his work and research have strongly influenced the way that I view steroid creams. I truly hope that in time, my skin will heal completely from this steroid-induced eczema.
So....here is what I would like to say to Dr Rap!
Dear Dr Rapaport,
I would like to thank you for your research and studies into topical steroid addiction. I first read your papers back in November 2011 and reading them changed my whole perception of steroid creams. For the previous 15 years, I have viewed steroid creams as a magical "fix" to my eczema and applied them in increasing doses. It's funny; I noticed my skin getting worse and the "eczema" spreading but never thought that it could have been the steroids causing the problem. Of course, it all seems so obvious now.
I quit the creams after I read the article and have been in withdrawal for almost 15 months. In that time, I have been fortunate to meet with others suffering from the same condition. The similarities in our skin were shocking. After seeing many pictures of people going through this, there is no doubt in my mind that this is steroid induced. I now understand why you refer to us as the "red people".
It must be hard for you to meet with so much scepticism from the medical profession and your fellow doctors. It must be frustrating when you see dermatologists continue to prescribe increasing doses of potent steroids. But be assured that your work has helped many and continues to have far-reaching influence. For example, I live in the UK. I have never met you, but have benefited from your research. I now have my own blog on the subject which has, in turn, helped many others around the world. My blog has around 600 hits a day; all people searching for answers.
As more people awaken to the dangers of steroids, we can spread the word even more, recording our progress in photos, creating a portfolio of proof that will be difficult for doctors to deny. I am confident that one day, perceptions about steroid creams WILL change and that is all thanks to you and doctors like you.
So thank you, Dr Rapaport. Continue your good work knowing how much it means to patients on a personal level, patients like me. Thanks to your research I have the hope of having normal skin again and enjoying life to the full. please continue to support us and know that we appreciate everything you have done to help us.
Your appreciatively,
Louise
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