Scleroderma and Raynauds

Welcome to Connect, Mary.
I'd like to introduce you to @kdubois @mooneagle @dash99999 @taterjoy @dogmamat @olga1dubrovsky2_babies @mcpucho and @jerseygirl926 who have all talked about Scleroderma or Raynaud's disease or both.

Mary, while we wait for the others to join the discussion, why don't you tell us a bit about yourself. For example, how long have you been experiencing scleroderma and Raynaud's? What do you find to be your biggest challenge? What tips and tricks have you learned to help you cope?

Hi @mary14, I was just diagnosed with Raynaud's this past November, but we think I've had it since 1995, maybe earlier. (My mother has it, too.)

Normally, doctors can prescribe medications to help with blood flow, but Mayo figured out that I don't properly-metabolize most medications, and they can't use them with me. So, treatment-wise, my doctor has instructed me as follows... staying warm is essential.

For my hands... I run them under warm water regularly throughout the day. If I go outside in the winter, I always wear lined gloves.

For my feet, moisture-wicking socks are essential. My doctor initially told me to wear wool socks because wool is a fabric that still helps you retain heat when it gets wet, but I'm allergic to wool, so cotton is my next option. Additionally, even when I'm in the house, I always wear socks *and* shoes/slippers to keep my feet warm. And I always wear socks to bed. If I am outside in the cold for a long time, I use foot warmers, especially down by the front half of my feet. (A year ago and the year before, I went with each of my daughters' French classes to old Quebec City, and it is ***very*** cold there. The foot warmers worked amazingly well.)

Body-wise, in the wintertime, I'm always wearing three layers on top. I find that wearing a tighter, camisole-like shirt underneath everything really helps me keep the heat in. In the summertime, air conditioning really makes me cold quickly, so I always have what I call my "summer sweater" with me, especially if I go out to eat or to the mall because I freeze in those places. I'm usually wearing capris versus shorts, also.

I hope this info helps!

I have being diagnosed with Scleroderma as part of Systemic Sclerosis. Reunald's   disease more then 20 years ago, when this area was very new and underdeveloped. I watched myself course of this debilitating disease, which brought me today still fighting and fighting symptoms after symptoms. It is not disease, it is symptoms piling up over the years. I have MCD, moving to more moderate etc. I try to read all what associated with it.  I was introduce to a walker, cane for balance improvement.I am 70 y/o nowOlga

I have had scleroderma and raynauds for approximately five years. I am struggling at the moment with chilblains on my toes and my big toe is swollen despite wearing warm socks etc. also I have ulcers on two of my finger. My rheumatologist wants to to start Methotexate by injection. Is anyone on this and if so do they actually help and did you have major side effects. I struggle with blood pressure medication as my blood pressure is low so they make me feel ill.

I am looking to learn from others what has helped Scleroderma. How they have dealt with jaw issues, face paralysis, and preventing skin issues.

I had Covid in January 2023 that was mild on my respiratory system, but with awful Covid fingers and toes. After it resolved I had Raynaud's off and on. In summer 2024 I was found to have anti-nuclear antibodies in a centromere pattern with a titer >1280 and specific to centromere b at >8.0. My hands were puffy. It took 6 months to see a Rheumatologist. By then I had developed many telangiectasia on my shoulders/trunk and inside my lips. I have a few on my face and hands. He wanted me to start taking mycophenylate (Cellcept), but that frightens me. My ANA is suggestive of limited systemic scleroderma, but the speed of onset and shoulder involvement suggests the more deadly diffuse variation. I am a biochemist by training and found studies showing that over active Toll-like 4 receptors are involved in the limited SSc type of disease. My docs wouldn't prescribe it as off label, but I was able to get an online script for low dose naltrexone and began it in late January at 1.5 mg nightly. I'm currently taking 3 mg nightly. My fingers are now back to normal. I saw a Rheumatologist at Stanford via telehealth. They took it in stride as it seems it's given for other autoimmune diseases. My local Rheumatologist is now more open to it. He is doing all if the right tests to check my lungs and heart, but also testing for past viral infections that might come back if I do agree to the cellcept. You might discuss Low Dose naltrexone with your doctor to see if it will help you too. I don't think there will be a clinical trial because it's too inexpensive and pretty much freely available now.

I would also recommend joining this other forum on Inspire specific to scleroderma. I am blockwd from providing the link.
Everyone on it has scleroderma or is supporting someone with it.

I have been having prickling fingers and toes for the past month but noticeably increased in the past two weeks. My fingers don't turn the waxy white but instead I feel the sensation of pins and needles throughout the day.
For the first time, I have what I'm 99% sure are chilblain on my left big and middle toes.
I was diagnosed with bronchiectasis (a chronic lung condition in 2022) which can be linked to autoimmune diseases.
I saw a rheumatologist last year and at that time and the tests and clinical diagnosis for systemic lupus, sjogrens or something else were inconclusive—meaning there were not enough factors to make a clinical diagnoses. (I was not having the pins and needles sensation consistently until a month ago).
I'm paranoid something is beginning to make itself evident. The last time I last saw the rheumatologist, I had a positive ANA and low complements (C3 & C4). I'm going to go back on Tuesday to have her re-evalute me based on these newer symptoms. Nervous!

If you can get an ANA screening test reflux to titer then you'd be better able to evaluate what is going on. I was in a similar boat and went to Quest diagnostics directly and paid about $100 out of pocket to figure out mine are Anti-centromere antibodies. Maybe your doctor can order the test to reduce your costs if you have insurance.