Chronic Hand and Foot Eczema and Toctino?

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?

Thanks.

Edited April 11, 2013 at 8:42 am

Report post

8 replies. Join the discussion

Just wanted to share that we’ve had a great experience using Excegone rocket cream for myself and my child. It is a natural based cream using arugula extract. It’s the only OTC that worked and his eczema was getting really bad and spreading from his neck to his elbows and knees. He stopped itching and the skin cleared up.

Report post

Do you continue to use those leather gloves?
Leather or chemicals used to treat them... Shoes, gloves.
Have you tried changing your shoes?
Have you noticed any reactions with chemicals? New clothes, newspaper, paints, woods, perfumes, paints, soaps, detergents, cleansing products, bleach.

Report post

Thanks for your responses. I've stopped using those leather gloves and others, and if I do wear work gloves I wear my cotton ones underneath them. I have changed my shoes and virtually all the cosmetics I use have been dropped or changed to okay ones. I've even taken off my wedding ring and a chain I had. I wear my cotton gloves when I'm reading the newspaper too.

We've changed our furnace and got an air exchange system, and cleaned up the basement.

Still trying everything. Thanks again.

Report post

Allergy to chemicals: soaps, detergents, cleansing products, chlorine, bleach.
Allergy to formaldehyde: new buildings, new clothes, newspaper, liquid paper, pressed woods, paints, paint thinner, fumes, perfumes, name tags.
Allergy to perfumes: perfumed soaps, makeup products, hair spray, flowers.
Allergy to newspaper: paper goods, newspaper, facial paper, hand towel, pine products, tissue paper, etc.

I had a couple of allergies to chemicals (car exhaust and perfumes) that caused me eczema all over my body. I was extremely sensitive to those smells.

I did NAET to clear those sensitivities. Now, I don't have any reactions and I'm able to use makeup without problems.
What is NAET: http://www.naet.com/Patients/whatsnaet.aspx & http://www.naet.com/Patients/faq.aspx

Report post

I drove myself mad looking for hidden allergens. I know the regulars here are probably getting sick of this, but please Google 'topical steroid addiction'.

I'm nearly 6 months off steroids and healing really nicely. Went for a walk in the sunshine at the weekend. My partner was sniffling and sneezing away with hayfever and for the first time in my life, I wasn't. I'm even back on a spot of wheat and dairy with no discomfort or itchiness. Crikey, I even cleaned the rabbits out - no more life in a bubble for me!

Sorry to hear of your troubles Sakic. The eczema probably popped up for one reason or another in the first place but all of this sudden and random sensitivity to everything around you definitely sounds very suspicious.

Let me know if I can answer any questions xxx

Report post

Thanks Kitty! The steroids didn't help me and I haven't been using them for about 10 months.

Report post

Sakic,
Were you able to get Toctino in the US? I'm going to be asking our dermatologist about it, but all my reading shows it's not FDA approved in the US, just in Canada and other countries. My son has similar eczema to yours and we are really battling it right now.

Kitty,
I watched your YouTube video about your eczema journey and really related about going mad trying to find the allergens! My question is what do you think brought on your eczema to begin with? I know that the steroids perpetuated the problem, but once you stopped using the steroids have you had flare ups and how have you treated them? We've only used steroid ointments for a short time, but high potency and the long-term looks difficult for number of flare ups.

Thanks!

Report post

Gemsmommy,
I live in Canada and got the drug there; I'm not sure about the US.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support NEA

Help the National Eczema Association reach its goals and support people like yourself by making a donation today.

Donate to the National Eczema Association

Discussion topics

From the National Eczema Association

Resources from NEA

Community leaders

Disclaimer

The National Eczema Association (NEA) would like to remind visitors and group members that the views and opinions expressed on this site are not necessarily those of NEA. Please consult your personal physician regarding any medical information that is shared on this site.