Macular Amyloidosis and skin rash

@lorraine06 Welcome to Mayo Clinic Connect. Macular Amyloidosis is actually a dermatology disorder. Has your dermatologist given you any insight to long-term treatment for this? It must be unsettling to have it around your feet and toes!
Ginger

The hot showers might be aggravating the itching. I used to love to soak in a hot bath but would break out in hives that took weeks to go away. Now I take a quick warm shower and then apply lotion to keep the itching at bay. Helps most of the time. But I sure miss my tub soaks.

Welcome @lorraine06, I moved your discussion to the Skin Health support group here: https://connect.mayoclinic.org/group/skin-conditions/

I'm also tagging @mkempson42 on this discussion.

I have not been back because my husband was diagnosed with cancer at the same time and the focus has been on me continuing to earn money and caring for him. I have to make time to do it, but finding it is quite difficult. So I've been managing as well as I can. I will have to get to see him of course.

Thanks for your response.

Yeah ... the itchiness comes in waves and makes me feel desperate. The hot shower is remarkably helpful in the moment and the itch relief is so good. I'm going to try to stop that. I usually do a few minutes of the hot and then turn to really cold. That and the ointments and Cerave make it tolerable for several hours. But, again, you may be right and I will attempt to put a stop to the hot showers.

Thanks for you response.

I don't know anything medically, however, I have very similar symptoms caused by my AML.

I had no idea that I had this until a rash broke out on the palms of my hands. I went to my GP and was prescribed triamcinolone. It didn't work very well I think because where it was located. I went back and she prescribed prednisone. Worked well but the rash came back and it was worse and I pleased with her to give me another course. It worked but came back. I made an appointment with a dermatologist because I became covered with the rash and it was making me crazy. He gave me the diagnosis and clobetasol for the areas. What he told me was the prednisone worked temporarily but it would come back worse -- which it certainly did.

For now, because my husband was diagnosed with cancer this year, I have to wait to get back to him due to lack of time between work and his care. So I've decided to treat it the best I can with adjusting my life-style that includes dealing with stress by diet change, cutting out primarily carbs and sugars since they are bad for my immune system, doing yoga (which I stopped doing because of the disturbance with my feet), and drinking as much water as I can, and calming myself with meditation. I don't know if it's working but today has been a better day for my big itch. I also procured some salve to use for spots with a 1:1 ratio of THC and CBD to calm my skin down. It helps.

@lorraine06 - I debated for a while whether or not to share my experience. I'm sharing this in the hopes that it "might" be helpful. THIS IS NOT MEDICAL ADVICE, AND MIMICKING THIS IS NOT RECOMMENDED.

I have these dark spots on my lower arm outside area, and it's been there for 20 years. Most of the time I assumed it was due to sunburn, as this is the exposed surface of the arm. In the past 5 years, at least 4 dermatologists have gone to, most of them sold their expensive products from their pharmacies. One even did a biopsy to tell this has happened due to my scratching. The dark spots (hives) kept on increasing and along with the itchiness. I had all hopes lost.

This is when I met a Skin care specialist in India. Within 10 minutes, he diagnosed I have Macular Amyloidosis condition, and this can be cured but the treatment needs to be established after some trials. I didn’t believe him, because I'm used to doctors around here ordering a number of tests before determining the illness. The doctor then told me that because of this illness, I should have a dark-colored hive in my back. Then we examined my back and discovered a hive on the top of my back.

Because I was only there for a brief period of time and chose only one choice, I did not have the opportunity to try other options. There has been no irritation so far, and the black patches have decreased by 10%. I realize it's taking longer than I anticipated, but I've had this for 20 years. When I return to India next year, I hope to pay him another visit and stay a little longer this time.

This is the medication he gave me: Colchicine

A cream to suppress itchiness (Clobetasol Propionate). Using this cream, he created a moisturizer which I apply after everyday shower.

I take Colchicine pill with breakfast.

Other Recommendations given to me:

Use mild shower gel or hand wash to wash the arms.

Do not use scrub on the arms or the affected areas.

Eat healthy food.

Warning:

This pill can cause boils in the mouth, and it happened to me. I had to stop it for a week, then I started lower dosage (1 pill in 2/3 days) and now I am taking it every day. Doctor had given me 90 day supply. Now, my US primary physician has given me another 90 days prescription and am continuing to take .it

Looks like Macular Amyloidosis is common in south Asians. Also, my US Physician questioned me about this pill since most of the papers predominantly states it is recommended for gout. Here is the paper which mentioned this pill can be used for Macular Amyloidosis.

Thank you so much for sharing this with me. Right now I seem to be at the end of this major outbreak but I know it is not cured. I don't have a control self so I'm not sure what has helped. Maybe everything I've tried. When the rash went to my toes I believe I had a small toenail fungus so things went wild (that's what the picture is). I have been using Clobetasol for tougher areas and Triamcinolone for other itchy areas. When I went to Patient First, the doctor gave me Clotremazol cream for that area and it really helped along with antibiotics. I slather my body in Cerave and that really helps too. I'm not sure but I've also been beefing up my diet with water, very low carb, no sugar, and vitamins along with intermittent fasting. Also watching stress.

It is very interesting that this seems to run in my family. On my father's side the line is primarily, English, French, Scotch, etc. But my mother's family was German and French. Her paternal grandmother looks Middle Eastern and that is what family DNA indicates. When I told my sister about it, she said she had a patch on her back that was itchy in the same place and my mother did too. In fact, after her death last year my sister said she found a tube of Clobetasol in her medicine cabinet. Anyway, it appears that so far, I'm the only one who has this rash. The rash was determined by the biopsy the dermatologist took.

I know this was lengthy, but I so appreciate what you wrote. This gives me some hope. I had it in my mind that this is incurable and the prospect of these outbreaks occurring for the rest of my life is not particularly welcome. I am going to search this out. We live near Johns Hopkins and my husband suggested I look for a dermatologist there that is Indian. I'm definitely game for that. It was an Indian doctor who was one of my clients who taught me the value of turmeric for breast cancer and how to use it in cooking daily.

Again, this was more than welcome!