Absolutely crazy. Thank you all so much!
On to the half million.....
Monday, 16 June 2014
Monday, 2 June 2014
Look at my Amazing HEALED SKIN photos!
OK people...this is the moment you have been waiting for...the big reveal!
After 30 months off topical steroids I can finally reveal my new, lovely skin.
I hope these pictures give hope to everyone out there going through TSW.
The photos are in pairs: The one at the top shows what my skin was like before and the one underneath shows what it is like today.
I know that people worry that certain things may delay their healing, or stop them healing altogether and I'd like to take this opportunity to bust some myths:
Myth 1: Moisturisers Stop You Healing
I have found this to be a myth. I have used moisturisers throughout my TSW and found them incredibly useful. People have issues when they have reactions to ingredients in certain moisturisers and may wish to stop for that reason, but those who DO moisturise shouldn't feel guilty about it or worry that they won't heal.
I have seen people write on blogs that you will not heal if you use moisturiser. Well I am healed and I know lots of others that have too. The choice to moisturise or not is a personal one and one group should not slate another for their personal choice.
Myth 2: You Won't Heal if you Eat Junk
Again, this is another guilt thing. We all KNOW that healthy food=healthy bodies but I have seen people put themselves through some weird elimination diets during TSW, most of which are probably unnecessary unless genuine allergies are suspected.
I haven't denied myself anything during TSW. I have had alcohol in moderation, tea, coffee, chocolate, sugary food, tomatoes and spicy food. And I still healed.
Eating junk IS bad for you, but it is unlikely to affect your TSW unless you have an actual allergy to a certain food.
Myth 3: You Won't Heal if you Use a Steroid Inhaler
I consider this a PARTIAL myth. I used a steroid inhaler throughout my TSW as I couldn't breathe without it and I still healed.
HOWEVER: Some individuals, particularly children may have addiction symptoms from steroid inhalers. One parent on the Itsan forum pointed out that her child has TSW because she used, not topical steroids, but inhaled steroids and is going through the same symptoms as TSW.
So I offer a word of caution with this myth. Yes, I healed despite using a steroid inhaler, but there are some susceptible individuals who may react badly to steroid inhalers. It would be a good idea to discuss alternatives with a doctor, but if steroids are the only option, try the lowest dose you can manage and always rinse with water after inhaling.
I hope my pictures have given some encouragement. And when we say on ITSAN that "You Will Heal", it is true!
After 30 months off topical steroids I can finally reveal my new, lovely skin.
I hope these pictures give hope to everyone out there going through TSW.
The photos are in pairs: The one at the top shows what my skin was like before and the one underneath shows what it is like today.
TSW BEFORE AND AFTER PHOTOS
Leg before and after.
Hand Before and After
Arm before and after
Neck Before and After
Face Before and After
I'm Now White-Not Red!
Not long ago, I predicted that my skin would heal in the summer and it has. The sunshine has done me good. It seems appropriate to be posting these photos just as summer starts.
Myth 1: Moisturisers Stop You Healing
I have found this to be a myth. I have used moisturisers throughout my TSW and found them incredibly useful. People have issues when they have reactions to ingredients in certain moisturisers and may wish to stop for that reason, but those who DO moisturise shouldn't feel guilty about it or worry that they won't heal.
I have seen people write on blogs that you will not heal if you use moisturiser. Well I am healed and I know lots of others that have too. The choice to moisturise or not is a personal one and one group should not slate another for their personal choice.
Myth 2: You Won't Heal if you Eat Junk
Again, this is another guilt thing. We all KNOW that healthy food=healthy bodies but I have seen people put themselves through some weird elimination diets during TSW, most of which are probably unnecessary unless genuine allergies are suspected.
I haven't denied myself anything during TSW. I have had alcohol in moderation, tea, coffee, chocolate, sugary food, tomatoes and spicy food. And I still healed.
Eating junk IS bad for you, but it is unlikely to affect your TSW unless you have an actual allergy to a certain food.
Myth 3: You Won't Heal if you Use a Steroid Inhaler
I consider this a PARTIAL myth. I used a steroid inhaler throughout my TSW as I couldn't breathe without it and I still healed.
HOWEVER: Some individuals, particularly children may have addiction symptoms from steroid inhalers. One parent on the Itsan forum pointed out that her child has TSW because she used, not topical steroids, but inhaled steroids and is going through the same symptoms as TSW.
So I offer a word of caution with this myth. Yes, I healed despite using a steroid inhaler, but there are some susceptible individuals who may react badly to steroid inhalers. It would be a good idea to discuss alternatives with a doctor, but if steroids are the only option, try the lowest dose you can manage and always rinse with water after inhaling.
I hope my pictures have given some encouragement. And when we say on ITSAN that "You Will Heal", it is true!
Friday, 30 May 2014
Steroid Creams Can Cause Cataracts
I will begin with a question for those of you who have used steroid cream at any point in your life.
When your doctor prescribed the cream, did he/she warn you of the risk of cataracts?
In my case, the answer is a definite NO. I have been prescribed steroid creams in varying strengths ever since childhood and my doctors dutifully filled our repeat after repeat prescription.
No warnings about eye problems, ever. I would have remembered.
It was with sadness and shock that I received a text message earlier this week from a very dear skin friend who was beside herself with worry. Her young teenage daughter, who has used steroid creams most of her life and is now going through TSW, has been diagnosed with a cataract in her eye and now needs to have eye surgery.
This is a young teenage girl for goodness sake! I always though cataracts were an "old persons" thing.
I did some further research and was amazed at what I found. Page upon page of evidence linking topical steroid use with cataracts. Not just topical steroids either; cataracts can be caused by oral or nasal steroids too, like that lovely inhaler I use for my asthma...
Check out these links for more information:
Steroid-Induced cataract study
Case report of two children. Cataract caused by hydrocortisone on face.
Steroids cause cataracts AND glaucoma
Iatrogenic Cataracts
In an interesting quote from the last article on the list:
"I would say 95 percent of the cases of iatrogenic cataracts that I see are caused by the overuse of topical steroids. Intraoperative and systemic steroids are also a problem,” Dr. Olson said."
Goodness me. 95% is a high number.
I would urge everyone who has every used steroid creams on the face to go and get their eyes checked out. You are at risk of glaucoma and cataracts.
I have been lucky in that my eyes are ok, although I have suffered a lot of discharge since going through TSW, which I believe is related to the dilated blood vessels in my eyes. I also suffered from blurred vision when I first quit steroids.
Dr Fukaya, and expert on steroid addiction, says:
“You don’t need to visit to any dermatologist including me, but you should visit to an ophthalmologist periodically.” That was my habitual saying to patients with atopic dermatitis.
I hope my skin friend is OK and makes a full recovery from her surgery, but this should never happen. For a child to suffer this way because of a side-effect of a MEDICINE is awful.
First do no harm.....
When your doctor prescribed the cream, did he/she warn you of the risk of cataracts?
In my case, the answer is a definite NO. I have been prescribed steroid creams in varying strengths ever since childhood and my doctors dutifully filled our repeat after repeat prescription.
No warnings about eye problems, ever. I would have remembered.
It was with sadness and shock that I received a text message earlier this week from a very dear skin friend who was beside herself with worry. Her young teenage daughter, who has used steroid creams most of her life and is now going through TSW, has been diagnosed with a cataract in her eye and now needs to have eye surgery.
This is a young teenage girl for goodness sake! I always though cataracts were an "old persons" thing.
I did some further research and was amazed at what I found. Page upon page of evidence linking topical steroid use with cataracts. Not just topical steroids either; cataracts can be caused by oral or nasal steroids too, like that lovely inhaler I use for my asthma...
Check out these links for more information:
Steroid-Induced cataract study
Case report of two children. Cataract caused by hydrocortisone on face.
Steroids cause cataracts AND glaucoma
Iatrogenic Cataracts
In an interesting quote from the last article on the list:
"I would say 95 percent of the cases of iatrogenic cataracts that I see are caused by the overuse of topical steroids. Intraoperative and systemic steroids are also a problem,” Dr. Olson said."
Goodness me. 95% is a high number.
I would urge everyone who has every used steroid creams on the face to go and get their eyes checked out. You are at risk of glaucoma and cataracts.
I have been lucky in that my eyes are ok, although I have suffered a lot of discharge since going through TSW, which I believe is related to the dilated blood vessels in my eyes. I also suffered from blurred vision when I first quit steroids.
Dr Fukaya, and expert on steroid addiction, says:
“You don’t need to visit to any dermatologist including me, but you should visit to an ophthalmologist periodically.” That was my habitual saying to patients with atopic dermatitis.
I hope my skin friend is OK and makes a full recovery from her surgery, but this should never happen. For a child to suffer this way because of a side-effect of a MEDICINE is awful.
First do no harm.....
Wednesday, 7 May 2014
Template Letter for Doctors and Dermatologists
One of our amazing Itsan forumites has put together this sample letter to send out to dermatologists. You could print out the letter as it is, or tweak it to fit your own circumstances and experiences. Bloggers could also add blog links or progress photos. The letter could be sent normally, or cut and pasted into an email. Please readers, I get about 700 hits a day on this blog. If every person reading this sent just one of these to a local doctor, we could make a real impact!
Thanks so much to the "Red Skin Warrior" who put many hours of hard work into writing this.
Don't forget to add these links at the end of the letter, or embed them in the text if emailing:
Dr. Marvin Rapaport's video --
https://www.youtube.com/watch?v=0JNVj6eAHDs
****URGENT INFORMATION****
Dear Dermatologist, please read this letter.
I am a sufferer of what's known as "topical steroid addiction" and am now going through withdrawal from it. There are many of us on the ITSAN board ("International Topical Steroid Addiction Network") who are trying to cope with the terrible after-effects of topical steroid use from such creams as Hydrocortisone OTC, Triamcinolone Acetonide, Clobetasol, etc.
Dr. Marvin Rapaport, a Dermatologist and Clinical Professor at UCLA, who also has a private practice, discovered a long time ago that eczema patients can become addicted to topical steroids in as little as 6 weeks, with horrendous results. Respected Dermatologist Researcher, Dr. Albert Kligman, has written many peer-reviewed journal articles on the topic of topical steroid addiction. The new president of the American Academy of Dermatology, Dr. Mark Lebwohl, co-authored a journal article on Corticosteroid Addiction.
Our history goes like this: We applied the topical steroid and, the more we applied it, the more our eczema became uncontrollable and very widespread and the less effective it became. I went from having one tiny spot to it being all over my entire body! Normal eczema itches, but it doesn't burn as our skin does, as Dr. Rapaport stated in his video (below). The ITSAN board, which Dr. Rapaport founded, is filled with people with similar stories.
When the person tries to stop using the steroid creams, it gets increasingly worse. In many people, the skin turns bright-red over much of their body, with the characteristic "red sleeves" on their arms, which Dr. Rapaport describes. The skin burns and many suffer severe facial swelling and edema in their arms and legs. Some people's eyes even swell shut! One person on the board had such pain and swelling in their legs, they couldn't walk and literally crawled around their apartment. Our skin itches intensely, so badly many cannot sleep, cannot engage in any activities and even become housebound. Their skin oozes fluid, to the point some cannot cope, they cannot wear clothes, must quit their jobs, and are even rendered bedridden with the debilitating symptoms.
The posts on ITSAN are truly heartbreaking, particularly in people who are long-time users of steroids and the little children. This horrible withdrawal stage can last from approximately 6 months to 3 years, or even longer than that in individuals who have used the steroids for many years.
Dr. Rapaport has treated about 2,000 patients with topical steroid addiction and helped them go through the difficult withdrawal process. ALL have recovered, once they quit all steroids "cold turkey", as he advises. All of them! They did not, in fact, have "eczema" (after the initial outbreak) -- they were experiencing a reaction to the topical steroids. The treatment itself was causing the spreading, worsening flare!
Countless people are suffering from this affliction needlessly. I urge you to watch Dr. Rapaport's short video, carefully consider this information, and re-think the way you prescribe steroids, be it creams, shots or oral tablets. Even infants are being prescribed steroids for cradle cap! One baby went from having cradle cap to severe eczema. Also, please check out the ITSAN website below for more information. ITSAN.org was founded in February of 2012 and has had over 2,000 members in our forum, with new ones arriving daily.
Topical steriods are dangerous, if used too long. I did not even give a comprehensive list of the health issues involved, i.e., it can affect your eyes. Please help us spread awareness and inform other dermatologists of this travesty. This needless suffering needs to stop now!
Thank you for your consideration.
A "Red-Skin Warrior" (add real name here!)
Thanks so much to the "Red Skin Warrior" who put many hours of hard work into writing this.
Don't forget to add these links at the end of the letter, or embed them in the text if emailing:
Dr. Marvin Rapaport's video --
https://www.youtube.com/watch?v=0JNVj6eAHDs
****URGENT INFORMATION****
Dear Dermatologist, please read this letter.
I am a sufferer of what's known as "topical steroid addiction" and am now going through withdrawal from it. There are many of us on the ITSAN board ("International Topical Steroid Addiction Network") who are trying to cope with the terrible after-effects of topical steroid use from such creams as Hydrocortisone OTC, Triamcinolone Acetonide, Clobetasol, etc.
Dr. Marvin Rapaport, a Dermatologist and Clinical Professor at UCLA, who also has a private practice, discovered a long time ago that eczema patients can become addicted to topical steroids in as little as 6 weeks, with horrendous results. Respected Dermatologist Researcher, Dr. Albert Kligman, has written many peer-reviewed journal articles on the topic of topical steroid addiction. The new president of the American Academy of Dermatology, Dr. Mark Lebwohl, co-authored a journal article on Corticosteroid Addiction.
Our history goes like this: We applied the topical steroid and, the more we applied it, the more our eczema became uncontrollable and very widespread and the less effective it became. I went from having one tiny spot to it being all over my entire body! Normal eczema itches, but it doesn't burn as our skin does, as Dr. Rapaport stated in his video (below). The ITSAN board, which Dr. Rapaport founded, is filled with people with similar stories.
When the person tries to stop using the steroid creams, it gets increasingly worse. In many people, the skin turns bright-red over much of their body, with the characteristic "red sleeves" on their arms, which Dr. Rapaport describes. The skin burns and many suffer severe facial swelling and edema in their arms and legs. Some people's eyes even swell shut! One person on the board had such pain and swelling in their legs, they couldn't walk and literally crawled around their apartment. Our skin itches intensely, so badly many cannot sleep, cannot engage in any activities and even become housebound. Their skin oozes fluid, to the point some cannot cope, they cannot wear clothes, must quit their jobs, and are even rendered bedridden with the debilitating symptoms.
The posts on ITSAN are truly heartbreaking, particularly in people who are long-time users of steroids and the little children. This horrible withdrawal stage can last from approximately 6 months to 3 years, or even longer than that in individuals who have used the steroids for many years.
Dr. Rapaport has treated about 2,000 patients with topical steroid addiction and helped them go through the difficult withdrawal process. ALL have recovered, once they quit all steroids "cold turkey", as he advises. All of them! They did not, in fact, have "eczema" (after the initial outbreak) -- they were experiencing a reaction to the topical steroids. The treatment itself was causing the spreading, worsening flare!
Countless people are suffering from this affliction needlessly. I urge you to watch Dr. Rapaport's short video, carefully consider this information, and re-think the way you prescribe steroids, be it creams, shots or oral tablets. Even infants are being prescribed steroids for cradle cap! One baby went from having cradle cap to severe eczema. Also, please check out the ITSAN website below for more information. ITSAN.org was founded in February of 2012 and has had over 2,000 members in our forum, with new ones arriving daily.
Topical steriods are dangerous, if used too long. I did not even give a comprehensive list of the health issues involved, i.e., it can affect your eyes. Please help us spread awareness and inform other dermatologists of this travesty. This needless suffering needs to stop now!
Thank you for your consideration.
A "Red-Skin Warrior" (add real name here!)
Saturday, 26 April 2014
Exciting News from the Medical Establishment!!!
Finally! The doctors are starting to listen to us and take steroid addiction seriously.
I found an article online from the Times of India website which shows that a group of Indian dermatologists are launching an initiative to warn their fellow doctors about topical steroid abuse. They are calling it the MATSA initiative, which stands for the Movement Against Topical Steroid Abuse.
An article on the pharmabiz website states that:
I found an article online from the Times of India website which shows that a group of Indian dermatologists are launching an initiative to warn their fellow doctors about topical steroid abuse. They are calling it the MATSA initiative, which stands for the Movement Against Topical Steroid Abuse.
An article on the pharmabiz website states that:
"Prof. Jayakar Thomas, president of INSTED said,“As topical steroids bring relief from itching, the patients and pharmacists start using and promoting it as magical remedy for every skin disorder, which should not be the case. The adverse events of topical steroid abuse are steroid-induced acne, excessive sensitivity to sunlight, hyperpigmentation/hypopigmentation, cutaneous fungal and bacterial infections, striae, telangiectasis, hypertrichosis (excessive unwanted hair growth) and also systemic disorders like diabetes mellitus and cushingoid manifestations”.
Dr Dinesh Kumar, general secretary of INSTED said, “In view of the existing menace of topical steroid abuse, a Continuing Medical Education (CME) program is being organised to educate on oral antihistamines (anti-allergic drug) and topical steroid usage which happens to be common prescriptions in everyday practice. This CME is accredited by the Tamil Nadu Medical Council for CME Credit hours.”"
Exciting news indeed! I'm going to keep a close eye on this story and report any developments on the blog. Meanwhile, it may be a good idea for those in TSW to print out the articles to share with their own doctors and dermatologists.
Exciting news indeed! I'm going to keep a close eye on this story and report any developments on the blog. Meanwhile, it may be a good idea for those in TSW to print out the articles to share with their own doctors and dermatologists.
Thursday, 3 April 2014
Skin Updates: 28 Months of Topical Steroid Withdrawal! (photo)
Hi folks!
Here I am at the 28 month mark and I haven't posted anything on here in over a month. I'm enjoying my blog break way too much and psychologically it has been quite hard to return to the blog and "TSW World" now that I am feeling so much better.
I kept myself busy last month doing voluntary work in the community. As well as lifting my spirits considerably, it also had the added benefit of getting some sun on my skin. The sun is just starting to peek through here in the UK and the benefits to my skin have been enormous. It's not quite T-Shirt weather yet, but strangely enough, the little bit of diffused sunlight I have received on my face seems to have benefited by whole body. My inner arms, which had been a problem area, cleared up, even though I hadn't exposed the skin to the sun directly. Has anyone else had this happen, or am I just odd?
Anyway...time for a picture update!
You can see how much that little bit of sunshine has helped me. My skin is returning to its normal, pre-TSW colour and is no longer red. I do not need to use much moisturiser, as the skin is producing its own oils. I still use a little hemp cream around my mouth in the mornings, as this area can be a little flaky (I think because I use a steroid inhaler still). The jojoba oil is also suiting me well.
The period from October until February had been a stagnant phase and I believe that this was directly related to the winter weather. I truly believe that as Summer progresses, my skin will heal totally and I will not need to use any creams at all at this point. It remains to be seen whether the TSW rash will return in October again, but I try not to dwell on that too much.
I've noticed a few newsworthy updates in the TSW world since I've been on my blog break. The first is the ITSAN survey, which is very exciting as it aims to give patients a steroid usage score based on the usage and potency of creams used over their lifetime. The survey is worth doing, although I did find it quite hard and would recommend using a calculator! Once Itsan have 500 results, they can collate the scores into something meaningful and hopefully start to see patterns that relate to TSW healing times. The survey can be found on the forum homepage.
Another interesting news item is the development of Dr Fukaya's Clofibrate ointment, which has finally been made available to the general public after a test period. Check out Dr Fukaya's website for more details about how the ointment works. He also has a video on Youtube explaining the science behind it. If any blog readers have tried the ointment, please let me know how you got on with it.
I'm off again, as my computer is very laggy and driving me crazy! Hopefully I will get a new one soon.
Happy healing folks and don't stop believing!
Here I am at the 28 month mark and I haven't posted anything on here in over a month. I'm enjoying my blog break way too much and psychologically it has been quite hard to return to the blog and "TSW World" now that I am feeling so much better.
I kept myself busy last month doing voluntary work in the community. As well as lifting my spirits considerably, it also had the added benefit of getting some sun on my skin. The sun is just starting to peek through here in the UK and the benefits to my skin have been enormous. It's not quite T-Shirt weather yet, but strangely enough, the little bit of diffused sunlight I have received on my face seems to have benefited by whole body. My inner arms, which had been a problem area, cleared up, even though I hadn't exposed the skin to the sun directly. Has anyone else had this happen, or am I just odd?
Anyway...time for a picture update!
The period from October until February had been a stagnant phase and I believe that this was directly related to the winter weather. I truly believe that as Summer progresses, my skin will heal totally and I will not need to use any creams at all at this point. It remains to be seen whether the TSW rash will return in October again, but I try not to dwell on that too much.
I've noticed a few newsworthy updates in the TSW world since I've been on my blog break. The first is the ITSAN survey, which is very exciting as it aims to give patients a steroid usage score based on the usage and potency of creams used over their lifetime. The survey is worth doing, although I did find it quite hard and would recommend using a calculator! Once Itsan have 500 results, they can collate the scores into something meaningful and hopefully start to see patterns that relate to TSW healing times. The survey can be found on the forum homepage.
Another interesting news item is the development of Dr Fukaya's Clofibrate ointment, which has finally been made available to the general public after a test period. Check out Dr Fukaya's website for more details about how the ointment works. He also has a video on Youtube explaining the science behind it. If any blog readers have tried the ointment, please let me know how you got on with it.
I'm off again, as my computer is very laggy and driving me crazy! Hopefully I will get a new one soon.
Happy healing folks and don't stop believing!
Saturday, 15 February 2014
Congratulations Itsan!!!!
I just logged onto the forum this morning to discover that it than now has 1000 members!
The forum only started in September, so this is a big achievement and an indication of just how many people are out there suffering, or caring for someone with topical steroid addiction.
I can only see it snowballing from here, as the word spreads and more people find Itsan in their search for answers.
If you are reading this and have not yet joined the forum, please do, as we are a friendly bunch and are here to help and support you.
If you are already on the forum, but a "lurker" who hasn't yet posted or introduced yourself, I encourage you to dip a toe in the water and share your story with the rest of the forum. We won't bite, promise!
Big congratulations to itsan for reaching this milestone and a massive thumbs up to all the members who make it such a vibrant and supportive place to be. I love the exchange of ideas from members old and new and that even now that I am two years into TSW, I am still learning new things from these people. I also really appreciate the fact that we have a couple of medical doctors on board, who kindly give their time and expertise to help others.
Here's to the next 1000 and liberating more folks from the "steroid matrix."
Itsan.org
The forum only started in September, so this is a big achievement and an indication of just how many people are out there suffering, or caring for someone with topical steroid addiction.
I can only see it snowballing from here, as the word spreads and more people find Itsan in their search for answers.
If you are reading this and have not yet joined the forum, please do, as we are a friendly bunch and are here to help and support you.
If you are already on the forum, but a "lurker" who hasn't yet posted or introduced yourself, I encourage you to dip a toe in the water and share your story with the rest of the forum. We won't bite, promise!
Big congratulations to itsan for reaching this milestone and a massive thumbs up to all the members who make it such a vibrant and supportive place to be. I love the exchange of ideas from members old and new and that even now that I am two years into TSW, I am still learning new things from these people. I also really appreciate the fact that we have a couple of medical doctors on board, who kindly give their time and expertise to help others.
Here's to the next 1000 and liberating more folks from the "steroid matrix."
Itsan.org
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