Anyone dealing with severe atopic dermatitis on hands?
I have had eczema for years with flare ups affecting various body parts. In past steroids were prescribed when flare ups happen and they worked. I sopped using steroids last August because of fear of bad affects of using them. I recently started having flare ups on hands and fingers. Very painful and frustrating. I have used prescribed topical ointments that work short term but it keeps coming back. I am about to start light therapy but it needs to be done 3 times a week for at least 2 months. The high priced biological products have been prescribed but the cost for Medicare patients is way too high. Hoping someone out there has suggestions?
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Good evening @pmenor, "Sever Atopic Dermatitis". It wore me out. I tried everything for a couple of years. Ointments, ointments, and more. Steroids when necessary. Finally, I was approved for Dupixent a biological product administered with a bi-weekly injection. I have had no outbreaks, flares, or incidents since August 2022. And yes, Medicare is problematic. Here is one suggestion. If you work with the medical professionals on the Dupixent staff they can assist you with the costs. First, make sure Medicare lists Dupixent on its formulary. If it isn't there request an exception immediately. Second, make sure Social Security reviews your financial/tax reports and that low-income assistance is denied. Then you can apply through "Dupixent My Way" for co-pay coverage. It took a while and was worth the wait.
Please let me know if you have additional questions. l now receive a 3-month supply refrigerated and protected in a quite large box. There have been no side effects. I feel honored and very lucky.
May you be free of suffering and the causes of suffering.
Pmenor- Keep in mind, even if you have Atopic Dermatitis you may have one or other types also. I have or had 3 types of eczema, although in my case I don't have Atopic. As I age I collect more types, my first type was ACD.
Have you been tested for Allergic Contact Dermatitis, ACD, with the 5 Day Extended Patch Test? Google this expensive test which Medicare covers. I stopped getting hand eczema after getting my test results which identified my allergens over 10 years ago.
I had been using Dawn dish soap, after testing learned it contained Metholizothiazole, one of my many positive allergens, it's a perservative banned in many countries because it is a common allergen. Why does dish soap need a preservative anyway? Perviously derms told me to use protective gloves when using cleaning products. I learned I was allergic to the element Mercaptobenzothiazole, which comes from rubber and used in many protective gloves. Latex comes from rubber, but a latex free glove means nothing to me as I am not allergic to that. I did learn I can use vinyl or plastic gloves. I tested positive to a dozen contacts I now avoid. I wish I had learned about this test a decade earlier to avoid the suffereing I endured. Yes steroids would provide temporary relief, but they are a treatment, a treament with negative long term side effects. To be free from ACD you need to avoid what is causing it.
@gardeningjunkie, @pmenor, Good evening, I just wanted to comment on the 5-Day Patch Test. Not only is this test expensive, not all dermatologists are authorized to use it. It sure helped me get my type of dermatitis under the microscope. I think we washed clothes, sheets, comforters, towels, etc for a few weeks. I really learned a lot about the items that can be harmful to us. And one that had to go from our house was Dawn dish soap. Your dermatologist should also be able to give you a book of about 122 pages that presents all the products determined to be safe. It was a pretty expansive "bailout".
I also wanted to mention that I had weeks and weeks of light therapy. It was highly controlled with a graduated entry. My arms felt smoother and less irritated.
I thought it might be helpful to share a couple of photos with you. Hope to add some meaning to the words. The first two are just my arms. The third photo is of the patch test.
Don't hesitate to keep Connect on your "share" list. When you share your experiences, hundreds of folks benefit. Connect has lots of members who are observers but not contributors.
May you be safe, protected and free from inner and outer harms.
Thank you for sharing. Did light therapy help your hands? I am starting that journey next week focusing on my palms and fingertips. I am praying it helps. I too added some photos below.
I had Dyshidrosis (sp?) aka Housewives Eczema. I went to many doctors over 15 years. Everyone thought fungus. I had the little water blisters that looked like poison ivy, they break, my hands got cracked, bleed and this was very painful . Over the years, I have run into women that had this all the way to the elbows. I was a 25 year old woman with hands that looked like a dog mauled me. Most of my life I did the cleaning and I worked on cars as a hobby. In old days we washed clothes with our hands. I found one doctor that immediately told me what it was and said to keep hands free of any chemicals, soaps, lotions and paramount to stay dry for at least 6 months. He gave me a cream as well. I was cured after 8 months.
What was the cream?
You gave hopeful information about being cured of Dyshidrotic, DE, but to my knowledge there is no cure. You gave helpful information that keeping hands dry does calm the flare. My son has dyshidrotic, and steroid creams do help heal the skin, but steroids only treat the symptoms, they are not a cure.
I have Allergic Contact Dermatitis, ACD, and used to get terrible hand eczema, after testing I learned what to avoid- certain soaps, lotions, certain protective gloves. I no longer get ACD, but it is not curable, just avoidable.
Your comment is very informative and helpful. I never had light therapy, but I tried sunbathing in the nude (private area) but it hurt just to have sunshine on my papules, so could only tolerate it for about 5 minutes a time and noticed no difference. My papules never were infected.
Good point mentioning that all dermatologists are not licensed for patch testing. It was ignorance on my part to keep going to a dermatologist for 10 years who only prescribed steroids and never mentioned patch testing. This was in the days before the internet. Today we can learn about all our conditons with this tool. It turns out this very nice derm wasn't licensed for patch testing and for 10 years her advice was to stop wash my hands, wear protective gloves (which I turned out to test allergic to) and to keep up the steroid cream. I learned about this test by accident, not from a doctor. Your photos are heartbreaking. How are you doing now?
Sorry, I dont remember the name, but it was probably a steriod. He did say not to use Vaseline as it can hold in moisture. It is a type of skin damage because of the abuse of all the chemicals and soaps, etc. I would clean motor oil off with varsal and gasoline. The key to healing me was to stay dry and clean. It is difficult, but use a hair dryer to dry them. Even if using rubber gloves, they should be turned inside out after use so bacteria doesnt build up. He was very specific about this. I hope this helps. I cannot tell you how wonderful it is to not have this. It is, to me, a very serious problem with all the new germs popping up. We touch everything.
Any suggestions to help decrease the horrible itching associated with atopic dermatitis? I tried warm compresses and various approved moisturizers but they only provide short relief. Night time seems worst. My derm just prescribed a steroid taper to get flare up under control . I had to stop light therapy after 5 sessions because palms and fingers were so bad. Any suggestions greatly appreciated.