My forehead and upper cheek are covered with tiny, oozy blisters. The skin is raw.
I was awake most of the night because my neck was wet. I am just wondering when I am going to get a reprieve.
I was on the Itsan forum today and I read a comment from someone who was reportedly healed after 3 years off steroids. She has just started flaring again.
I am seriously wondering whether complete healing is actually possible. Am I fooling myself here? Is there a chance that 15 years of steroid creams have done permanent, irreversible damage to my skin?
It is a sobering thought and only time will tell.Going back to steroids is not an option though.
Monday 31 December 2012
Sunday 30 December 2012
How Long Does Topical Steroid Withdrawal Take?
I have addressed this question in the past and will no doubt address it again in the future, as it is the ONE question that everyone embarking on this journey wants answering.
When I first started writing this blog back in December 2011, my only source of information on the subject was an article on Wikipedia and Dr Rapaport and Dr Fukaya's case studies.
The Wikipedia article seemed to hint that with antibiotics, "Steroid rosacea" could be cured within months. Dr Rapaport's articles mainly featured people who were cured within 6 months and Dr Fukayas detailed report contained improvement photos of patients over the course of about 18 months.
Naturally, I thought I would be "done" in about 6 months, which was both naive and optimistic and based on a lack of knowledge on the subject. Remember I have used steroid creams since childhood, and had used medium strength creams on my face daily for the last 15 years. This was not really going to be a quick fix.
Since then, I have re-read these articles many times and it occurs to me that the reason the patients healed so quickly was because the majority of them had not used steroid creams long term like I had. If someone uses a mild steroid cream for a short period, the withdrawal time will be a lot quicker than someone who has used potent steroids for decades.
Incidentally, I did have a "healed" phase between 7 and 11 months where my skin was virtually normal. I have now discovered that this is common in topical steroid withdrawal. I flared again at 11 months and my skin has not returned to the state it was in at 7 months.
Happily, I have read of skin friends that are now healed at about 18 months. Others are reporting healing at 3 years off the steroid creams. When a doctor was recently interviewed on the subject, he said that he felt that 3 years was the average withdrawal time. Children obviously heal a lot quicker.
Only yesterday I was speaking online with some TSW veterans, one at 2.5 years, the other at 3 years. neither was fully healed, though both had experienced major improvements.
I now believe that 3 years may be a realistic timespan to expect full healing, and it is important to stay realistic, otherwise you would go mad. This is what I know so far about the TSW timeline:
1-4 weeks off steroids: Initial rebound flare. Skin starts to burn and turn red.
1-4 months: Red patches start to spread and merge to cover whole body. Limbs start to swell and skin oozed fluid. The classic "red sleeve pattern" usually appears on the arm, stopping abruptly at the wrist. Skin cycles between red flares and dry flaky phases.
4-6 months: Flares become less frequent, although some have a peak flare at around 4 months.
6-12 months: The skin calms down. one can resume normal tasks again and socialise more. The skin may appear normal in many places.
11 months+: at about a year off steroids, the skin flares again with remarkable intensity, taking the sufferer by surprise.
18 months: Some may be healed at this point.
3 years: Most will be healed by this point.
That is as much as I know so far. Obviously as I go on, this blog will fill in some of the mystery between the 12 month and 3 year mark.
When I first started writing this blog back in December 2011, my only source of information on the subject was an article on Wikipedia and Dr Rapaport and Dr Fukaya's case studies.
The Wikipedia article seemed to hint that with antibiotics, "Steroid rosacea" could be cured within months. Dr Rapaport's articles mainly featured people who were cured within 6 months and Dr Fukayas detailed report contained improvement photos of patients over the course of about 18 months.
Naturally, I thought I would be "done" in about 6 months, which was both naive and optimistic and based on a lack of knowledge on the subject. Remember I have used steroid creams since childhood, and had used medium strength creams on my face daily for the last 15 years. This was not really going to be a quick fix.
Since then, I have re-read these articles many times and it occurs to me that the reason the patients healed so quickly was because the majority of them had not used steroid creams long term like I had. If someone uses a mild steroid cream for a short period, the withdrawal time will be a lot quicker than someone who has used potent steroids for decades.
Incidentally, I did have a "healed" phase between 7 and 11 months where my skin was virtually normal. I have now discovered that this is common in topical steroid withdrawal. I flared again at 11 months and my skin has not returned to the state it was in at 7 months.
Happily, I have read of skin friends that are now healed at about 18 months. Others are reporting healing at 3 years off the steroid creams. When a doctor was recently interviewed on the subject, he said that he felt that 3 years was the average withdrawal time. Children obviously heal a lot quicker.
Only yesterday I was speaking online with some TSW veterans, one at 2.5 years, the other at 3 years. neither was fully healed, though both had experienced major improvements.
I now believe that 3 years may be a realistic timespan to expect full healing, and it is important to stay realistic, otherwise you would go mad. This is what I know so far about the TSW timeline:
1-4 weeks off steroids: Initial rebound flare. Skin starts to burn and turn red.
1-4 months: Red patches start to spread and merge to cover whole body. Limbs start to swell and skin oozed fluid. The classic "red sleeve pattern" usually appears on the arm, stopping abruptly at the wrist. Skin cycles between red flares and dry flaky phases.
4-6 months: Flares become less frequent, although some have a peak flare at around 4 months.
6-12 months: The skin calms down. one can resume normal tasks again and socialise more. The skin may appear normal in many places.
11 months+: at about a year off steroids, the skin flares again with remarkable intensity, taking the sufferer by surprise.
18 months: Some may be healed at this point.
3 years: Most will be healed by this point.
That is as much as I know so far. Obviously as I go on, this blog will fill in some of the mystery between the 12 month and 3 year mark.
Friday 28 December 2012
Articles on Steroid Addiction
One of the main problems that people have when they come off steroid creams is explaining the decision to their doctor. Many doctors simply refuse to acknowledge the possibility that steroid creams can be addictive or cause damage to the skin when used long term.
However, there are many scholarly articles available that strongly back up our position. I have included some of them on here, so feel free to print them off to use as a resource to use with your doctor or dermatologist.
Firstly, I would recommend printing the scientific articles on the ITSAN website which are the main documents that we use to explain our condition. .
Dr Marvin Rapaport, Dr Albert Kligman and the Japanese Doctors Fukaya and Sato are some of the original doctors who were writing about steroid withdrawal decades ago before it hit the mainstream media. It is interesting that many doctors in different parts of the world were able to discover the same thing about topical steroids. The following articles support Dr Rapaports findings by coming to the same conclusions.
Steroid Addiction in Malta This article quotes Dr Suzana Ljubojevic, speaking at the First World Congress of the International Academy of Cosmetic Dermatology . She said that "Patients persist in using steroid creams or ointments because they have typically learned the hard way about the severe rebound inflammation that occurs if they stop. In short, they find themselves caught between rosacea like steroid dermatitis and the erythematous pustular eruptions of steroid rebound."
Indian Journal of Dermatology This article was created by the collaboration of many respected doctors and dermatologists. The conclude that "Effective treatment of TC addiction and rosaceiform dermatitis is possible, and results in significant improvement in the quality of life of these patients. Treatment of facial adverse effects of TCs focuses on complete cessation of use, which can be abrupt or gradual, depending on the potency of the product and duration of use. In cases of addiction, progressively less-potent TCs are introduced over a period of weeks to months."
Morphologic Investigations on the Rebound Phenomenon After Corticosteroid-Induced Atrophy in Human Skin. This article is from 1983, but one of its authors Dr Albert Kligman was writing about steroid cream addiction as long ago as 1979. In this experiment, the doctors applied steroid cream to volunteers and noted the skin reaction. Rebound symptoms occurred. Note the amount of references at the bottom of the article. Each reference leads to more articles about steroid addiction. Plenty of evidence if you are looking for it!
I will be posting more articles on subsequent blog pages.
However, there are many scholarly articles available that strongly back up our position. I have included some of them on here, so feel free to print them off to use as a resource to use with your doctor or dermatologist.
Firstly, I would recommend printing the scientific articles on the ITSAN website which are the main documents that we use to explain our condition. .
Dr Marvin Rapaport, Dr Albert Kligman and the Japanese Doctors Fukaya and Sato are some of the original doctors who were writing about steroid withdrawal decades ago before it hit the mainstream media. It is interesting that many doctors in different parts of the world were able to discover the same thing about topical steroids. The following articles support Dr Rapaports findings by coming to the same conclusions.
Steroid Addiction in Malta This article quotes Dr Suzana Ljubojevic, speaking at the First World Congress of the International Academy of Cosmetic Dermatology . She said that "Patients persist in using steroid creams or ointments because they have typically learned the hard way about the severe rebound inflammation that occurs if they stop. In short, they find themselves caught between rosacea like steroid dermatitis and the erythematous pustular eruptions of steroid rebound."
Indian Journal of Dermatology This article was created by the collaboration of many respected doctors and dermatologists. The conclude that "Effective treatment of TC addiction and rosaceiform dermatitis is possible, and results in significant improvement in the quality of life of these patients. Treatment of facial adverse effects of TCs focuses on complete cessation of use, which can be abrupt or gradual, depending on the potency of the product and duration of use. In cases of addiction, progressively less-potent TCs are introduced over a period of weeks to months."
Morphologic Investigations on the Rebound Phenomenon After Corticosteroid-Induced Atrophy in Human Skin. This article is from 1983, but one of its authors Dr Albert Kligman was writing about steroid cream addiction as long ago as 1979. In this experiment, the doctors applied steroid cream to volunteers and noted the skin reaction. Rebound symptoms occurred. Note the amount of references at the bottom of the article. Each reference leads to more articles about steroid addiction. Plenty of evidence if you are looking for it!
I will be posting more articles on subsequent blog pages.
Thursday 27 December 2012
Month 14: Neck Flare
My neck is giving me lots of grief lately.
To look at it, it doesn't appear too bad at all to the naked eye. It is not particularly red.
But it feels terrible. Every night I go to bed and my neck area oozes thin, sticky fluid. If I touch my hand to my neck, the whole area feels wet. The sheets and pillow end up smeared in ooze stains and need changing daily. The smell of the ooze is very "organic", one of the most unpleasant smells I have encountered, a musty, metallic smell. The ooze itself is blood serum, leaking out from dilated blood vessels.
Sleeping is tough, as it is a challenge to get comfy with a wet neck! Last night, I resorted to my old friend, the silk scarf, something I haven't used since my early TSW days. I wrapped it round my neck to mop up the ooze and protect the bedding from staining.
Waking up is another toughie. I wake up feeling gooey and smelly and my skin feels tight. Once the ooze hits the air, it dries and tightens. My neck and upper chest now feel incredibly sore and raw from all the oozing, but also dry and tight, restricting movement. I thought I was over this part and I am surprised how the neck ooze has come back. little consolation for those in the early stages of TSW, as I have just passed my 13 month marker.
My face is also unsettled, peeling on my nose and around my mouth, with lots of gouged out areas where my fingernails have been busy. I have taken to tying my hair up off my neck. Even soft fabrics, like fleece cardigans, feel like wearing steel wool.
It is times like this when I start to get doubts about whether I will heal. I know that thousands of people have healed of TSW, but can't help wonder whether I will end up being an exception, stuck in a steroid-free limbo of perpetual oozing and flaring.
I truly hope that the new year will bring me some new skin!
To look at it, it doesn't appear too bad at all to the naked eye. It is not particularly red.
But it feels terrible. Every night I go to bed and my neck area oozes thin, sticky fluid. If I touch my hand to my neck, the whole area feels wet. The sheets and pillow end up smeared in ooze stains and need changing daily. The smell of the ooze is very "organic", one of the most unpleasant smells I have encountered, a musty, metallic smell. The ooze itself is blood serum, leaking out from dilated blood vessels.
Sleeping is tough, as it is a challenge to get comfy with a wet neck! Last night, I resorted to my old friend, the silk scarf, something I haven't used since my early TSW days. I wrapped it round my neck to mop up the ooze and protect the bedding from staining.
Waking up is another toughie. I wake up feeling gooey and smelly and my skin feels tight. Once the ooze hits the air, it dries and tightens. My neck and upper chest now feel incredibly sore and raw from all the oozing, but also dry and tight, restricting movement. I thought I was over this part and I am surprised how the neck ooze has come back. little consolation for those in the early stages of TSW, as I have just passed my 13 month marker.
My face is also unsettled, peeling on my nose and around my mouth, with lots of gouged out areas where my fingernails have been busy. I have taken to tying my hair up off my neck. Even soft fabrics, like fleece cardigans, feel like wearing steel wool.
It is times like this when I start to get doubts about whether I will heal. I know that thousands of people have healed of TSW, but can't help wonder whether I will end up being an exception, stuck in a steroid-free limbo of perpetual oozing and flaring.
I truly hope that the new year will bring me some new skin!
Friday 21 December 2012
What a Difference a Few Days Make! (photo)
My scratchy face has healed very well after a couple of days.
The scratches are gone, but my face still looks a bit red. Put it down to winter!
The worst area currently is my neck. It has lots of raw areas and has been oozing a bit at night.
It looks like the vampires have been biting me!
Still, the white, normal skin is visible underneath, my skin is not burning and things are infinitely better than they were this time last year.
The rest of my body is really good, with mostly normal skin.
Quitting steroids was one of the best decisions I made. My skin is getting stronger by the day. A few more months and I hope I will be done with this for good.
The worst area currently is my neck. It has lots of raw areas and has been oozing a bit at night.
Still, the white, normal skin is visible underneath, my skin is not burning and things are infinitely better than they were this time last year.
The rest of my body is really good, with mostly normal skin.
Quitting steroids was one of the best decisions I made. My skin is getting stronger by the day. A few more months and I hope I will be done with this for good.
Tuesday 18 December 2012
Stress and TSW (photo)
Thursday 13 December 2012
Progress is Slow....(photos)
First of all, if anyone hasn't seen Rochelle's vlog, watch it NOW. She is where we all want to be.
I'm feeling a little downhearted today at the state of my cold-ravaged skin. The twice-daily school run exposes me to harsh temperatures and my face is covered with little cuts and scratches.
I just took this photo. Actually, my face doesn't seem to look too bad from the front, just a bit pink....
...but take a side-on view and you can see where my fingernails have been busy during the night, ripping chunks out of my cheek! Still, to get it in perspective, you can start to see the white skin showing through underneath and if i stop scratching for long enough, I think my face has to potential to heal quite well.
My mother in law visited yesterday. I was showing her Rochelles vlog and how I hoped to get to the same stage soon. She commented that I seemed to be a lot more comfortable "in my skin" lately and not so bothered about the redness. I suppose that is true. Having an upbeat, positive attitude goes a long way to beating this thing. My darkest days are when I feel bad about how my skin looks.
At least nowadays, I can look in a mirror without freaking out. When i was using steroid creams, my skin was so glowy-red that I cried every time I looked in the mirror.
The fact is that although improvements are slow. They are there. I honestly believe that once this cold British winter is over, my skin will really improve drastically. Maybe this time next year I will be completely healed. Here's hopin'.
I'm feeling a little downhearted today at the state of my cold-ravaged skin. The twice-daily school run exposes me to harsh temperatures and my face is covered with little cuts and scratches.
...but take a side-on view and you can see where my fingernails have been busy during the night, ripping chunks out of my cheek! Still, to get it in perspective, you can start to see the white skin showing through underneath and if i stop scratching for long enough, I think my face has to potential to heal quite well.
My mother in law visited yesterday. I was showing her Rochelles vlog and how I hoped to get to the same stage soon. She commented that I seemed to be a lot more comfortable "in my skin" lately and not so bothered about the redness. I suppose that is true. Having an upbeat, positive attitude goes a long way to beating this thing. My darkest days are when I feel bad about how my skin looks.
At least nowadays, I can look in a mirror without freaking out. When i was using steroid creams, my skin was so glowy-red that I cried every time I looked in the mirror.
The fact is that although improvements are slow. They are there. I honestly believe that once this cold British winter is over, my skin will really improve drastically. Maybe this time next year I will be completely healed. Here's hopin'.
Tuesday 11 December 2012
Month 13: Still Oozing...
Winter does not suit me.
I have noticed a bit of a downturn in my skin since the cold weather set in and sadly, the dreaded ooze has returned. BOO!!!!!
It isn't too bad though. It is not the yellow, thick ooze that plagued me in the early days of TSW. It is the "sticky sweat" ooze, which dries on contact with air.
I am fine during the day, but at night, the skin in my neck crease and round my ears gets damp and sticky. Sometimes the whole are from my chin to my chest is wet and sticky. If I lie on my back, the air dries the ooze very quickly, but it returns, depending on which side I lie in the bed.
When the morning comes, I can smell the metallic scent of the ooze (yuk) and the affected skin is dry and powdery. A dab of moisturiser usually has me back to normal and facing the day.
My face isn't particularly bad, but my chin and neck are quite rashy. My neck hasn't been this bad in a long while.
Still, it is not really interfering with day to day life, so I carry on regardless.My body skin is generally good, with just a tiny rash on my inner arms.
Bring on the summer.
I have noticed a bit of a downturn in my skin since the cold weather set in and sadly, the dreaded ooze has returned. BOO!!!!!
It isn't too bad though. It is not the yellow, thick ooze that plagued me in the early days of TSW. It is the "sticky sweat" ooze, which dries on contact with air.
I am fine during the day, but at night, the skin in my neck crease and round my ears gets damp and sticky. Sometimes the whole are from my chin to my chest is wet and sticky. If I lie on my back, the air dries the ooze very quickly, but it returns, depending on which side I lie in the bed.
When the morning comes, I can smell the metallic scent of the ooze (yuk) and the affected skin is dry and powdery. A dab of moisturiser usually has me back to normal and facing the day.
My face isn't particularly bad, but my chin and neck are quite rashy. My neck hasn't been this bad in a long while.
Still, it is not really interfering with day to day life, so I carry on regardless.My body skin is generally good, with just a tiny rash on my inner arms.
Bring on the summer.
Friday 7 December 2012
Connecting Through ITSAN and Blogging
Today I realized how fantastic a resource ITSAN can be for connecting people.
I love it when people email me from around the world or leave comments on my blog. I know that steroid addiction is a huge worldwide problem and it affects thousands of people.
A few days ago I had a comment on my blog from a lovely lady in Australia. She emailed me about how tough she was finding TSW. The trouble is, that I am in the UK and as much as I would like to chat or visit those suffering, geography prevents me!
This is where ITSAN came in. I was able to put out a call on the Itsan forum for those living near Geelong, where she was located. Several people replied and I have been able to send them all each others email addresses in the hope that they can meet up and maybe form a small group!
I also know that fellow bloggers Jake and Liz and Josh live near the Melbourne area so I hope that at some point they will be able to connect with the group too.
So thanks to Itsan for bringing people together. Some of the members in LA have had a meet up and it is the turn of the London crew next month. Steroid withdrawal is tough and it helps to have individuals who can steer you through it.
I love it when people email me from around the world or leave comments on my blog. I know that steroid addiction is a huge worldwide problem and it affects thousands of people.
A few days ago I had a comment on my blog from a lovely lady in Australia. She emailed me about how tough she was finding TSW. The trouble is, that I am in the UK and as much as I would like to chat or visit those suffering, geography prevents me!
This is where ITSAN came in. I was able to put out a call on the Itsan forum for those living near Geelong, where she was located. Several people replied and I have been able to send them all each others email addresses in the hope that they can meet up and maybe form a small group!
I also know that fellow bloggers Jake and Liz and Josh live near the Melbourne area so I hope that at some point they will be able to connect with the group too.
So thanks to Itsan for bringing people together. Some of the members in LA have had a meet up and it is the turn of the London crew next month. Steroid withdrawal is tough and it helps to have individuals who can steer you through it.
Wednesday 5 December 2012
A Healed Person at Last!
I felt that I had to post this great news.
A member of the Itsan forum and fellow blogger Rochelle has healed completely after 16 months off steroids.
Many congratulations Rochelle. I know it was hard for you but you did it and now your skin is all better!
When I first came off steroids, I did not know any people who were completely healed, but now I do. There are also now over 4000 people whom Dr Rapaport has treated who are now reported to be cured too.
Here's hoping I will be next!
A member of the Itsan forum and fellow blogger Rochelle has healed completely after 16 months off steroids.
Many congratulations Rochelle. I know it was hard for you but you did it and now your skin is all better!
When I first came off steroids, I did not know any people who were completely healed, but now I do. There are also now over 4000 people whom Dr Rapaport has treated who are now reported to be cured too.
Here's hoping I will be next!
Sunday 2 December 2012
Happy Blogoversary!
Today is my Blogoversary! Woot Woot!
I have been writing this blog for a whole year!
To date, the blog has had over 83,000 hits. I hope that it has helped some of those people. Even if it has helped one, I am happy.
The blog has connected me to people all over the world. I have realized that TSW is a universal problem and that many of us are suffering.
Blogging about has put me in touch with doctors, parents and sufferers of TSW from every walk of life and our shared experiences are creating a big picture of how TSW affects people. We also find our own ways of dealing with it and can help others with our advice and experiences.
I have seen ITSAN grow from a small website run by one person, to an international charity that helps thousands of people worldwide.
I have seen more and more people completely healed of TSW inclusing Karen, who I featured on the blog a while ago and also fellow blogger Rochelle. The ones that really touch my heart are the kids, especially little Keira and her "scratchy monster", who has now vanished for good. I am truly happy for these people. They give me hope.
When I first started my blog, there were a handful of blogs about TSW. Now there are many of us and I am adding new blogs to my list all the time.
I truly hope that by this time next year, we can make a real change in the way that the medical establishment views steroid creams. It would be great if these medicines were better regulated. I am not anti-steroid per se, but I do believe that these are powerful drugs that are handed out far too easily, especially to babies. When I read about tiny babies beaing slathered top to toe in potent steroids, it troubles me deeply.
I also hope that by this time next year, I will be completely healed...but we will see....!
I have been writing this blog for a whole year!
To date, the blog has had over 83,000 hits. I hope that it has helped some of those people. Even if it has helped one, I am happy.
The blog has connected me to people all over the world. I have realized that TSW is a universal problem and that many of us are suffering.
Blogging about has put me in touch with doctors, parents and sufferers of TSW from every walk of life and our shared experiences are creating a big picture of how TSW affects people. We also find our own ways of dealing with it and can help others with our advice and experiences.
I have seen ITSAN grow from a small website run by one person, to an international charity that helps thousands of people worldwide.
I have seen more and more people completely healed of TSW inclusing Karen, who I featured on the blog a while ago and also fellow blogger Rochelle. The ones that really touch my heart are the kids, especially little Keira and her "scratchy monster", who has now vanished for good. I am truly happy for these people. They give me hope.
When I first started my blog, there were a handful of blogs about TSW. Now there are many of us and I am adding new blogs to my list all the time.
I truly hope that by this time next year, we can make a real change in the way that the medical establishment views steroid creams. It would be great if these medicines were better regulated. I am not anti-steroid per se, but I do believe that these are powerful drugs that are handed out far too easily, especially to babies. When I read about tiny babies beaing slathered top to toe in potent steroids, it troubles me deeply.
I also hope that by this time next year, I will be completely healed...but we will see....!
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