In the fall of 2010, at the age of 47, I started to have eczema on my hands. Over the course of the next year, they got unbearably itchy and I would get painful cracks and fissures, especially on my fingertips. I tried countless lotions and then five or six prescribed steroid creams and they did not work. Nor did Protopic. I am too fair skinned for light therapy. After about 14 months, the eczema started up on my feet as well. I would get painful cracks and tears that made it painful to walk. I saw a nurse-practitioner, my doctor, and two dermatologists.
The second dermatologist had me go on Toctino for six months. It is an oral retinoid. It got rid of the painful cracks on my feet almost immediately and slowly over three months cleaned up my hands. It got rid of all my symptoms while I was taking it, and the side effects were not bad for me at all. Studies have shown that it works on about 50% of the people who use it, and is particularly effective if you have chronic hand eczema. It's hard to find an exact diagnosis for hand eczema, that is a more specific one, but I think I have hyperkeratotic fissured hand eczema.
I went off Toctino 2 months ago, hoping that the symptoms would not return. Some symptoms have returned, but of a lesser degree (so far) and maybe a different kind. Best of all, my feet have remained clear. On my hands I am no longer getting the painful cracks and fissures. However, I do have inflammation on my palms and minor peeling, and the peeling of the skin on both of my thumbs, and two fingertips. If it gets no worse than it has been for the past month, it would be worlds better than what I had before.
They say Toctino will work again if I need it. I am holding out using it again until it is really necessary, which hopefully won't come. Aside from potential side effects, it is very expensive--$800 a month--and if you don't have a drug plan that is prohibitive. If you apply you can get a $75/month discount.
Has anyone else out there tried Toctino? Did it clear up your symptoms? When you went off it, did the symptoms come back, and to what degree?
During this process, I also was tested twice for allergies. I have a Balsam of Peru allergy. Immediately, I changed all the cosmetic products I use. More recently, I've also eliminated foods that have Balsam of Peru like ingredients in them: Citrus products, vanilla, cinnamon, and tomato products. I think that has reduced the flare ups a little, but I'm not positive of this. It is an ongoing test right now.
Does anyone out there have a Balsam of Peru allergy that has manifested itself as chronic hand eczema? And does not eating these things help? I also am experimenting with the elimination of the foods that some think make regular eczema worse, like dairy products, wheat products, and eggs.
They don't know what causes my kind of hand eczema, but they think it could be some combination of genetics, contact irritation, and allergies. Over two years ago, I first noticed itching on the palms of my hands after playing hockey with new leather hockey gloves, and leather treatments can cause contact eczema. I live where there are a lot of black flies and mosquitoes and have used tremendous amounts of insect repellant and sun screen at the same time (I no longer do this). One summer I was visiting a nursing home room often where I had to spray gallons of air deodorizers. And like I said there is my Balsam of Peru allergy. Maybe one of these factors combined with genetics to start things off.
Toctino has been great for me: it cleared up my symptoms almost completely for six months and for the two months I've been off it the symptoms have been minor so far. My chronic hand eczema has gone from painful and debilitating to more of an unwelcome nuisance.
Does anyone have a similar story to this? And has anyone had an experience with Toctino that they could share? Or any recommendations for chronic hand and foot eczema?
Edited April 11, 2013 at 8:42 am