Scleroderma & Raynaud's UK (SRUK) | HealthUnlocked

Hi all 👋 I'm new here, and I joined because I'm trying to get answers as to what's causing the chilblain-like lesions I get on my fingers and toes, and...

Hi All, I have systemic scleroderma, pulmonary hypertension and kidney cancer. All diagnosed around the same time. The thing that affects daily life the most...

Good morning, I have a referral appointment with Dr Pauling a week today. I'm feeling very anxious about it. I wondered if anyone could let me know what to...

Winter again! (and the unwarmerable hands are even colder).I remember seeing a post in the past recommending wrist warmers as an aid to warming hands. I wonder...

hi there, im not sure if this is the right forum, but does anyone else suffer from food impactions, and if so did you get any treatment? (i have diagnosed...

Can anyone recommend some thin gloves for wearing during my keep fit class?I have some very old ones I'm sure I bought from Sruk

Hello everyone, I'm thinking of asking for a referral to a specialist scleroderma/Sjogren's doctor, rather than the general rheumatologist I see here in...

Hi , So I recently posted about sidenafil - I have been taking this for a couple of months with no effect on my Raynaud’s My gp has upped my dosage to 3x a...

After my latest rheumatologist telephone appointment, he suggested that I had an iloprost infusion for my Raynauds as for some reason, I seem to be feeling the...

hello I have just joined this network and am looking for any information on the drug mycophenolate. I have systemic scleroderma which is affecting my lungs...

hi all, any recommendations please for Raynauds hands with painful tissue scarring? I’ve had it quite badly this year and have succumbed to being medicated...

Diagnosed with LCSS for several years. Raynauds plus digestive issues, reasonably well controlled. Minor skin issues, dryness, freckles, white patches increase...

There doesnt seem to be any "gold treatment" medications for SC or morphea. Myocephalate seems to be popular and is a T cell inhibitor for the skin disease...

hello everyone, had a tuff 3 months, painful lines (like stinging pain) on my scalp developed in mid july (2024) with a constant headache. Was 100% before...

Hi there,This is the first time I have posted and am just wondering whether anyone else has experienced what I had last night. I was diagnosed with early onset...

Hello everyone, I posted here recently looking for ideas for combating acid reflux, and I mentioned how I use Xylimelts for dry mouth, which seem to help...

Recently started on methotrexate again and was surprised to read all the warnings in tge literature pack about light sensitivity and resulting cancers. I...

I have intestinal failure due to gastro involvement with scleroderma. My stomach is huge and I look about 8 months pregnant. I'm told this is bacterial gas but...

Hi everyone, Just wondering if anyone has tried Silicol Gel for reflux... (and general gut issues). I've seen it in Boots and in Holland and Barrett and was...

I am too sick for my Sclero just to be local Morphea. My "sign of the sabre" is growing every few days, and haved at least 3 other areas on my scalp. My GP is...

Hi I have Raynaud's as a consequence of scleroderma. Still having tests to pin down whether any of my internal organs are affected. For the last 15 months I...

I have scleroderma and had a heart attack a few months ago, has anyone else had both issues and if so were medications changed from normal beta blockers

Hi, just wondered if anyone has tried Tofacitinib for calcinosis? I have posted before re very large calcium deposits but it seems quite rare to have the...

I've been searching for life insurance for the first time since my diagnosis and I'm struggling to find a company that will insure me. Ironic considering that...

Hi, I rarely meet anyone with SSc and just wondered how many people are actually living with this horrible disease in my area and what specialists they see/...

he guys so I had my second infusion today as was supposed to have last week but postponed due to a horrible cold I manged to pick up from my grandchildren. It...

A good friend of my sister has had CREST for 30 years, I spoke with her and it has been a tuff journey, in the early days there wasnt really any specified...

I am wondering if anyone has had this surgery,I need to have it carried out with an iliac crest bone graft and tendon transfer. I have exhausted all other...