Experiences with

Scleroderma

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 is my bowels that do not behave in a fitting way that I find acceptable. I take loperamide every day.

She then went on to develop Scleroderma. It was misdiagnosed for years. This was in the 90s. She eventually saw Professor Carol Black who confirmed it was Scleroderma and that it was very advanced. My mother died from complications brought about by Scleroderma when she was 69.

I just got diagnosed with Diffused Scleroderma and now my Rheumatologist wanted me to start Mycophenolate. So devastating to hear my diagnosis. I suffer from sausage-like, tight, difficult to bend fingers. Few skin hardening on forearm and thighs. Raynaud's since 2022.

Hi, I have scleroderma and reynauds and while I am used to having cold hands and feet of late I am very cold all over, even my core. I was wondering if I might be low on some vitamins or minerals and was hoping someone might be able to advise. Regards, Darren

I know it's out there but I'm trying to work through my Scleroderma and Raynaud's without chemicals. Any thoughts?

I just want to thank everyone who has replied to my first post about me being a newly diagnosed Scleroderma patient. Grateful for all your warm wishes and support. Hopefully we all get through this horrible condition.

I’m 34 and have been diagnosed almost 4 years now, I’m struggling to come to terms with all the changes scleroderma & raynauds can cause.

The pictures then go to the local scleroderma / Raynauds centre to be checked and interpreted. Unfortunately I won’t receive any results from this test as it is for the purpose of research and checking how well the computer AI programme works and how usable it will be in clinics.

My scleroderma is very mild, i don’t take any medications only effect is Raynaud … do you have any recommendations please? Thanks

hi all you wonderful people - I am struggling a little and wondered how everyone else has experienced menopause with this disease. Especially differentiating between symptoms of menopause & symptoms of the disease…. Any guidance, advice or insight gratefully received and appreciated. I hope you are

Has anyone on here got scleroderma? Would love to ask a few questions. Thank you 😊

Does using Flax seeds change the skin and improve facial appearance in scleroderma?

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 finally onboard now, he has only seen SCLERO once in his working career. DERMO is a 3 month wait privately where i live. Am going to see a GP/

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

DO’S Tepid showers - not hot Dove or baby soap/unscented shower gels/soaps exfoliating gloves using quick, easy strokes Coconut oil in the shower – and afterwards Meds – Sertraline, Benadryl, Hydroxyzine, Questran packets, rifampin, cholestriramine, cholesterol lowering drugs (fenifibrate & simvastatin

I have had scleroderma (diffuse) for 20 years and it seems to have become more active recently. One of my problems is poor bowel control and I have used Peristeen and lately qufora washout systems and renew inserts to manage this.

Regarding itching…. DO’S Tepid showers Dove or baby soap/unscented shower gels/soaps xfoliating gloves using quick, easy strokes Coconut oil in the shower – and afterwards Meds – Sertraline, Benadryl, Hydroxyzine, Questran packets, rifampin, cholestriramine, cholesterol lowering drugs (fenifibrate

I’m waiting on a diagnosis but my doctor thinks I have linear scleroderma, is there anyone on here that can have a chat to me about this please? Many thanks

My total cholesterol level has shot up to 6.39. My internist wants me on a statin (Atorvastatin) with it's many negative side effects. I've been researching other cholesterol lowering medication options and many sites (including the Mayo Clinic) list bile acid sequestrants - including Cholestyramine

I take 300mg of ursodiol 3 times a day and I’ve been taking this for 6 years. My only one problem is that I have never been able to swallow pills before and still can’t get it right. I been getting complaints from my dentist about cavities popping up often when I visit for fillings. I try to rinse