http://dermnetnz.org/systemic/amyloidosis.html
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/medicalresearch/itchy_skin.php
http://www.medstore.biz/news/21868/breakthrough-science-itchiness/
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/137/5/553.pdf
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/therapies/LAS.shtml
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!!

hi everyone. my thoughts are definitely with you all. unfortunately, i have it too. on my arms near the biceps. i've had this ugly condition since the age of 12. it was much better back then, but i had no clue what it was. tons of wrong diagnoses. sorry if my usage of the word ugly offends anyone. it's how i feel about the way it looks on ME. peace.

so only 2,600 people in the entire USA (approximately) has this? no wonder why i felt so utterly alone and helpless as a teenager. maybe we can start a prayer circle. use the internet to our advantage. i don't know.

Hey everyone. I've been searching for hours and I feel hope for this is near. I will continue to search and share with you all. I've come across webpages mentioned YAG lasers and cyclosporine and other stuff http://archderm.ama-assn.org/cgi/content/full/137/5/553

I think it would be a wonderful thing to create a prayer circle. Whether it be through this site or emailing each one directly that is interested. I have Amyloidosis on my legs and arms and some spots on my back. I also have a spot near my breasts on the upper torso and whether related or not I have a problem with my feet which actually was my first symptom. I don't know if it is related but I suspect now that I had orr have atopic dermatitis along side of this. I too have the thickened dermis. I have nurses comment about that every time I have to get poked for lab tests with my hematologist. Does it get in anyone's way of their relationship with their spouse? Sometimes I can't stand to touch myself let alone anyone else touch me.

I am sure there is much all of us could share and that is what I am looking for is some people that understand and can relate to all of this. I would love to share experiences.

I have LA on the back of my back and my left knee after I gave birth to my daughter in 2005. I was too busy taking care of my newborn then so I just ignored the itching rash until it became so unbearable in 2009, I sought treatment from dermatology specialist at National Skin Centre, Singapore, on 31 Mar 2009.
Dr. Chua Sze Hon merely took a look at my skin rash and he wrote it on a piece of paper and handed to me and told me it was "Lichen Amyloidosis". He told me it cannot be cured for good but it can be kept under control. He prescribed Daivobet 30g ointment for me to apply twice a day. He also advised me to apply moisturizing cream, Physiogel Cream to keep my affected skin moisturised, as to reduce itchiness.
I followed his instruction and the itching skin rash recovered in 2 weeks. It did recur 2-3 times for the past 1.5 year, but Daivobet always helps the skin to recover in about 2 days.
For those who are suffering from LA, I understand what you have gone through, and most of all, your suffering. I hope you see light after reading my posting. LA can be kept under control. It is no longer a worry for me.

Hi there - I'm 29 and have had LA since I was about 18. I had horrible eczema before that, and once the eczema subsided a bit, the LA took hold. I have it on my shins and forearms, and a bit on my thighs. It seems to get itchier after I've been exposed to the sun, but its always pretty itchy already. Two years ago, I read about Cyclosporin being used to treat LA and discussed it with my Dermatologist. He said that the drug is SUPER strong, and he would never wish it on any of his own family. I was basically back to square one. I do use steroid ointments to help with the itchiness. Daivobet looks like it treats psoriasis, but something worth looking into. thanks for the info!

Hi,

I am the same. I have had eczema since i was little and i used huge amounts of steroids becaues it was so severe.

Now i am 24 and i have LA on my arms and legs and its spreading. I hope it doesn't come onto my face. If anyone can give advice or tell me what they have used i would appreciate it.

I have only just been diagnosed so i don't know much about this condition and i can't find much on it either.

I have been running my own clinic specialized for paoriasis and LA for 3 years, and I have been treating patients with LA, I know how hard it is to
cure the LA , and its nearly impossible to cure LA with conventional treatment such as steroid or vitamin cream. I discovered the integrative treatment ( probiotic, nutritious and chiropractic treatment) to cure LA and its been very
high successful outcome so far. if you are looking for safe and effective treatment to cure your LA , please feel free to contact me. I promise you will get the best ever effective care in my clinic.

http://www.teatemainsdor.com/english

For anyone that is still suffering from LA...try Retin-A or Tretinoin cream....it works for me, and the results are almost immediate. Within 2 months, all of my nodules are 80% gone. I still use prescription Dermasmooth and Clobetesol cream twice a day to help with the itch and use the "Ocean Potion Burn relief Ice" in the sunscreen isle that has Lidocaine in it to "numb" out the itch when it gets really bad. I found this article as well that you can share with your doctors. http://europepmc.org/articles/PMC4290188