My wife's history (in a nutshell)
At around age 10 she had typical kids eczema in her elbows and knees. This was treated with TSC. She used mid strength tsc very sparingly often and then daily for about 30 of her 40 years, with a few breaks along the way. She didn't use the super potent creams, didn't have the terrrible dramatic side effects that other people have had and hadn't seen a dermatologist for the last ten years as she felt they never had anything to offer. Her skin condition gradually declined to a point where I thought she looked like a junkie.
At age 39 she looked very old. Most of her skin was either very thin or very thick from scratching and overall she was in very bad condtion with extensive eczema. There was no moisture in her skin but some parts had an unusual gloss appearance. Her skin was also very dark. She had a bunch of other problems too, such as itchy eyes, an irritable bowel and no energy. She did a couple of withdrawals along the way but never realized what the problem really was so came back to the cream when she was itchy.
Jan 1st 2011 she quit the tsc cold turkey. Her face became very swollen and she spent the next few months red, swollen, defoliating and looking and feeling like she was about to die. For most of last year she was as itchy as hell. She tried to get help from a dermatoligst but the derm tried to deceive her into taking steroid cream again, by calling it something else. We complained to AHPRA (the Australian health board) and AHPRA supported the derm. We didn't find any help what so ever from our doctors or our medical system.
Most of last year was pretty miserable for her, with a few breaks along the way. From about the six month mark, there was a gradual improvement which I could see, but she couldn't see it. Her legs were the first area to come good, going from having extremely thin skin possibly with ichthiosis and a strange gloss appearance to having beautiful, soft, oily skin, although the eczema behind her knees came and went a few times.
Her legs cured last year and this year the good skin worked its way up her back and then around her sides and then to the front of her torso. The good skin continued a path up to her shoulders and then down her arms. Her face hardly ever let up last year, continously going through cycles. For some reason, her feet were never affected by the cream or the withdrawal.
She now has soft, oily, skin on 98% of her body. She has no eczema. In the last month or so, her face seems to be close to cured, although it is still a little red and dark. Her eyes stopped being swollen, and her neck, which had very thick skin from years of scratching, seems to have come good too, although also still a little red and dark. The rest of her skin is now a natural light tone. The orange face which she had for a while last year is definately a thing of the past.
The only part not cured yet is on her arms from her elbows to her finger tips. The skin here is now soft and oily but still doesn't look good yet. The cured areas have worked there way around her body in a sytematic way so it's obvious that her forearms and fingers will be cured soon too.
The itchiness now is 2% of what it was last year. I occasionally see her scratching her forearms. There's none of the hypnotic scratching that I saw last year. She seems to have her energy back, the ithcy eyes cured as soon as she stopped using the cream as did the irritable bowel. She has no eczema and is covered in beautiful, soft, oily healthy skin. She has no memory of ever having beautiful skin like this before.
Hopefully the end to this nightmare is only a couple of months away but I'll have to wait and see.
Apart from the pain, embarrassment and itchiness she suffered for most of last year, the depression was endless. Friends and family don't take the withdrawal seriously because they've never heard of it and the doctors have an agenda which doesn't include your welfare. There's no way they want to be involved in this withdrawal nightmare.
For most of last year, we wondered if there really was an end to this nightmare, but everything doctors Rapaport and Fukaya have written about has come true. Being brave enough to start the withdrawal and not give in to the cream was definately the best decision she could have made.
She's tried different things along the way to try to make the withdrawal a bit kinder but basically time seems to be the only thing that she really needed. Dr Fukaya wrote to us that doctors couldn't do much to help her and that it was just a matter of time.
Having said that, this year she found that sea water has been very helpful, but where I live the sharks are almost as dangerous as the dermatologists.
She's found long cotton 'arm sleaves' (driving gloves without the hands) have been helpful to keep the air off her arms and the same with a cotton scarf. She's spent hours in the bath soaking in pine tar or vinegar. She tried accupuncture but this was definatley a waste of money. She's tried a bunch of anti itch creams during the withdrawal but never found a magic solution to the uncontrollable itchiness. A good distraction (ipod games) have been the best solution to the itchiness.
So I think that just about covers it. For those of you who are going through a really tough time at the moment, hopefully this gives you a bit of inspiration. There is definately a happy end to this nightmare but how long it will take is anyones guess.
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