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.....
Friday 30 May 2014
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!)
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