Amyloidosis Support Group

http://dermnetnz.org/systemic/amyl...
above is a link to copy and put in your browser that will help to explain lichen amyloidosis. If you have more questions, you can contact the doctors at Mayo or Boston. Both are on the medical links on the website www.amyloidosissupport.com
Thumbelina

I have LA as well and I am sick of the lack of information out there. 1 in 100,000 people have this, and although it's rare, you would think that there would have been some progress made in fighting it. But all I continue to find, for the most part, are medical publications that repeat the same information over and over again.

To the original poster, I have found some information, but I'm not sure how helpful you may find it.

http://www.action.org.uk/medicalre...
http://www.medstore.biz/news/21868...
Here are two recent articles on "the science of itching" which claims that UK doctors have discovered a gene abnormality that causes itching. The article specifically mentions lichen amyloidosis, and that the disease itself is caused by scratching. In other words, the itch is not the symptom but the cause. So far, I haven't seen anything that mentions any new treatments as a result. But it gives some hope for the future.

archderm.ama-assn.org/cgi/reprint/...
Here is a PDF file that claims LA may be tied to atopic dermatitis.

There is a treatment, colcichine, that suppresses the immune system. Apparently this may help, but it's powerful, scary stuff. Doesn't that beat all? Our immune systems are the enemy!

There's an old dermatology article that talks about the use of PUVA treatment to get rid of LA. Supposedly this is pretty effective, but it's also pretty harsh too. You have to take a drug to make your skin more vulnerable to UV rays, and then you get lamp aimed at the LA affected areas.

You should look up Dr. Stanley Jacob. He has a special formula of DMSO that can be taken orally to fight LA. I talked to him briefly, and he told me that it can be effective, but only when the LA is not too advanced. You have to look him up on the internet.

I tried applying DMSO directly on the skin, and it is pretty hard to take. It burned and itched from the time I applied it until I finally wiped it off. Also, it can be dangerous, because it absorbs other stuff into the skin, so you have to stay away from harmful chemicals.

http://www.herbchina2000.com/thera...
Here is a site that claims to sell an herbal remedy. I would be careful about this one. It looks really expensive. I certainly can't afford it, and I'm also wary of people who claim to be able to do anything about LA.

There used to be a discussion on the old Braintalk forum, but it has changed owners and the discussion is gone. There was a woman who claimed to have been cleared of LA through topical steroids and Allegra. I e-mailed her, but I never got a response. I am suspicious of her story.

That's all I have for now. Hopefully there is something helpful in there.

You should get tested for systemic amyloidosis if you haven't already. Supposedly, the skin amyloidosis can spread to the internal organs. I would get tested myself, but I don't have insurance.

Take care.

I have been suffeing from the same thing about 15 years now. Tried so many tratments, no use but developing day by day! If you will find any remedy, please let me know. Medical technology is in its highest... but still we are suffering!!