
Amyloidosis Support Group
Primary amyloidosis occurs when the body's antibody-producing cells do not function properly and produce abnormal protein fibers made of antibody fragments. Some people with primary amyloidosis have a condition called multiple myeloma. The antibody fragments come together to form amyloid deposits in different organs, including the kidneys, where they cause serious damage.
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
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.
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.
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 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.
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......
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.
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!