Hi Dawn,

Please let me know how's ur outcome? Have you found the treatments that works for you?

I have the same skin problem at my lower leg and I havent been able to wear anything shorts to show the sight of the skin.

Hope you have found your solution.

Dont give up.
L

Hi! It's been almost a year since I posted that. I did go to a dermatologist again to see if there was any kind of new treatment available. He was in his 70s, and he said he only saw one other case of this...and that was while he was still in residency! He gave me several topical things to try, but nothing has been effective.

I even wrote to Dr. Oz about this! Since he's going to have his own show starting in September, maybe he'll address it one day.

Honestly, I have my doubts about dermabrasion. From what I've read, I think the amyloid protein is not a cause of the itch but a symptom. So, it seems ridiculous to go through that much trouble and pain only to see it return.

You're lucky to only have it on your legs. This means that treatment shouldn't be too hard to find. Ask a dermatologist about trying PUVA. It's ultraviolet light treatment that works great from what I've read.

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

I have had this condition since I was about 12 years old, so have had to deal with it for close to 27 years.
The only thing that seemed to work as getting a prescription form my family doctor for Apo-Gabapentin, which is a pill that used to be prescribed for people with epilepsy. There is a noticable difference within days- no itching. No itching- no scales (papules), they lessen. It works because it is not a skin disease per se, but a kind of neurological disorder. It is not a cure, but it does alleviate the symptoms, and you would have to take it for the rest of your life. Hope this helps.

I have been diagnosed with Lichen Amyloidosis (LA) about 7 years ago. I must have the condition for about 10 years. My GP prescribed anti-histamine and atopic steroids cream and ointment of different variety (Elocon, Eumovate and Dermovate) plus moisturizer such as Epaderm and Dermol 500 cream.

I have the condition mainly on the shin, slowly spreading to the outer thighs.

Initially, mild steroids cream, Eumovate did not have much effect and the condition slowly deteriorates. At the time I was taking Loratadine which helps to some extent to control the pruritic condition.

The first Dermatologist I see suggested the strongest steroids, Dermovate which help to clear after 2 months but I started getting spots with pus and rashes over the upper body. I read that this is a possible side effects of Dermovate. However, I also get tiny blisters on my fingers and itchy scalp - again I suspect its the side effect. In fact the side effect is worse than the original condition which was confined to the shin/thigh area.

I finally stopped using Dermovate and my upper body clears up and the LA starts to develop on the shins and thighs again. At this stage I was using Loratadine and moisturizer for relief.

My second visit to a different Dermatologist prescribed Elocon, a milder steroids. This steroids did not help much and by desperation because of a flare up and I ran out of Loratadine I took my wife's hayfever prescription NeoClarityn (desloratadine) anti histamine. To my surprise, I feel total relief from the pruritic condition for 24 hours. From that day on I took a 5mg tablet every day for 1 month. The results have been amazing - my LA is almost cleared. The only side effect I have was a minor dry mouth.

Soon I started some research on the Internet and discover there are limited info on desloratadine being used for LA. LA is the result of scratching due to some underlying condition causing the itchiness. Therefore it seems logical to control the pruritus and LA will clear up by itself.

I think desloratadine is a very promising treatment for LA. Here's a quote from http://www.skintherapyletter.com/download/stl_7_8.pdf

"It is approximately 10-20 times more potent in H1-receptor
binding than loratadine in vitro, and has 2.5-4 times more
antihistaminic potency in animals,1,2 and has no significant
cholinergic or H2-receptor affinity.

Furthermore, desloratadine does not penetrate the blood-brain barrier in animal studies, a fact that has been confirmed by the lack of sedation or cognitive impairment in clinical trials.

In vitro studies have shown that desloratadine also
possesses anti-allergic and anti-inflammatory activity. This
product inhibits the release by mast cells and basophils of
histamine and other inflammatory mediators.3,4 In addition,
it inhibits cytokines, and the induction of cell adhesion
molecules, as well as reducing eosinophil chemotaxis and
activation.5,6,7 Although these in vitro effects do not
necessarily translate into in vivo effects, these added
properties may result in improved clinical responses...."

It is now 6 weeks and I can see the skin condition on the Shin/thigh continues to improve. But a small patch is developing on my lower back - this is probably due to the clothes rubbing against the skin while seated.

I suggest those who have similar LA to try desloratadine and please post your experience here.

Hope this will help some of you.

if any one find the way to come out of lichen amyloidosis....do let me know..even i am suffering from same and really lost all my hope.. soon i am getting married and needs to out out of this itching and dark spots...

I have been suffering with LA since I was in my teens. It is only on my lower legs. I am 47 now and have tried almost every cream possible. Retin-A lightened the area a little, but after I stopped using it, the LA returned to its normal darkness. The only thing that has helped me has been castor oil. Each night before I go to bed, I rub some caster oil on each leg and let it soak in for about 15 minutes (castor oil is very oily). I've been doing this for about 6 months and my legs look a lot better. Don't know if it return when I stop, but for now I'll keep using the castor oil.

Thank you for everyone's comments and experience with this. I wouldn't wish this condition on anyone but, at the same time, it's nice not to be alone! Since my last writing, my symptoms have almost disappeared. It seems that as soon as I began taking a beta blocker for my high blood pressure, the itching stopped. Could there be an a connection?

I've had amyloidosis on over 70% of my skin. It started when I was 18 and I am now nearly 50. It is good to hear voices of others sufferring from the same thing and doing something about it. I have never gotten any effective treatment so I have been reading and I am thinking about starting a course of self-treatment. We have been doing some planting in the garden in the last month and my wife noticed that the skin on my upper back is smoother than it has been for many years so it looks like the exposure to sun light (or maybe just UV) can improve the condition. I have started to get a 10-15 minute sun-bathing session since last weekend to see if things continue to improve.

ghh1, I hope the UV treatment works for you. That is used for many skin conditions. Please let us know about your progress.

My boyfriend also has that problem, although his is over his entire body. He uses a lotion called Carmol 40 and LacHydrin. Those are the only things that seem to give him some relief. He has to apply them several times a day though in order to get relief.

Hi, I'm writing on behalf of my wife, who has had Lichen Amyloidosis since her teens. I've been tracking any development in the treatment of this disorder via Google Alerts and came across a study which found the use of Menthol to substantially reduce the itching and subsequently the other symptoms (hyperpigmentation and papules) are also reduced over time.

The paper can be found here: http://adv.medicaljournals.se/article/pdf/10.2340/00015555-0725

I have been seeking a source for a menthol cream as described (2% menthol in aqueous cream) here in Malaysia, but so far have been unsuccessful. The only product I could find (and it fits the description exactly) is Dermacool by PERN Consumer Products Ltd (http://www.pern-consumer.co.uk/our_products.html).

If I continue to fail to find a local distributor, I will either order it directly or try to make my own; I also found a resource describing how it can be done (http://www.pharmj.com/noticeboard/info/pip/menthol.html).

In addition to aqueous cream, I was thinking of trying a more natural medium such as aloe vera or shea butter, both of which has at least provided some relief from the dry skin arising from this condition.

The other treatment that may be viable is the narrow-band PUVA (as opposed to PUVB) but this is more difficult to source.....

Just thought I would share......

Since I last wrote in Feb 2010, I wish to update my progress dealing with Lichen Amyloidosis.

It is generally accepted that the cause of LA is the result of scratching. Most times the prevention or seeking relief of itching is akin to treating the symptom rather than the root cause. Since there is no known cure, the best option is to alleviate any conditions that arises from LA to provide relief and make life less stressful.

As I have mentioned, using desloratadine proved much better than loratadine in my experience. However, despite the initial promising results the condition of LA has not cleared completely. It is slowly coming back. Despite the setback I still believe desloratadine effective if it is taken prior to the flareup of pruritus . If I take any alcoholic drinks I will experience pruritus. If I take a 5mg tablet an hour prior to alcoholic consumption the effect of pruritus is greater reduced if not eliminated.

Temporary relief from pruritus is possible by means of topical medication such as cream, ice pack etc. I have also tried Salcura Zeoderm and spray and they too provide temporary relief. But I feel such temporary relief is just temporary but the cost of such treatment only make the pharmaceutical company rich.

There are so many treatments that will provide relief to the effect of LA Pruritus. It is perhaps a good policy to adapt as many of these treatment as possible and narrow down the most effective ones.

I believe the trigger for Pruritus is mostly the effect of diet. In my case, pruritus flareup tends to happen once or twice in 24 hours usually after meal and sometimes during sleeping hours. Spicy foods, certain herbs and alcohol are potential allergens. To avoid all potential foods that may cause a pruritus would make life dull. Therefore my strategy is to take desloratadine (anti-histamine) prior to meals that contain potential allergens. Exposing to sunlight and applying moisturizer to keep the skin cool helps too.
I feel I am much in control of LA than it had on me. Please note I am not in any way related or have any interest with products mention above.

Experience from others using anti-histamine would be helpful here.

I'm glad to hear there is possible relief with something that isn't topical. A tube of cream just isn't going to do it for me. I have it everywhere.

Thank you everyone for posting here with ideas.

I have toyed with the idea of going to a tanning bed for over ten years, but I've never had the guts.

These ideas about menthol, anti-histamines, and others, I am going to have to write down!