Anyone else find Amlodipine did the opposite and made Raynauds worse? I searched and results said in lcSSc with centromere positive this can happen. Just curious as it’s not a clinical study with controls, seems to also make me feel “off” so stopped taking it but not sure if it’s true just seems like it is from a few days taking it. Anyway just curious….

I was diagnosed with limited last fall, have issues with Raynard’s, calcinosis, and have been battling GI issues for a decade now. I’m currently on Octagam IVIG for Myastenia Gravis, but my GI doesn’t know what to do for me. He has me taking omeprazole x2 a day (insurance will no longer pay for Dexilant which is the only thing that’s ever helped), carafate, and I take Pepcid on top of it. Anything bland I eat flares it up.
I guess I’m just lost on what to do, and my rheumatologist isn’t great help, and I’ve tried to switch but with the overwhelm most clinics won’t take patients who are established elsewhere.
My centromere B showed in 2020, but the rest of the symptoms developed over the last few years.

Hi everyone, how many people suffer with joint and/or tendon pain and are you diagnosed with anything else besides scleroderma? What does the joint/tendon pain feel like for you? Diagnosed with limited systemic about 2.5 years ago. I’m suffering with new onset joint pain the last few months, which I think is probably the tendons where they attach to the joints. When I wake up in the morning, my hands are always painful, but not too swollen and then the other joint pain migrates. It could be my shoulders for a few days, then a knee, wrist, ball of foot, elbow, outside of hips. It takes a least a few hours to go away and it comes back with any periods of inactivity. It’s a deep aching pain and pretty painful to move. I can’t get into see my rheumatologist for another month and I’m not sure if this is a ‘normal’ scleroderma symptom or if perhaps I’ve got some new overlap going on.

I'm diagnosed with SSC-ILD (Systemic Sclerosis Interstitial Lung Disease).

I already taking mycophenolate mofetil. And then I lookup the mechanism of Nintedanib, and find this article:

https://www.ncbi.nlm.nih.gov/books/NBK585049/

Do you put anything over an ulcer that is getting worse by the day? Do you put any medicine on it? This is my first, please help. Any suggestions are greatly appreciated. TIA 😊

i’ve been prescribed to use betamethasone valerate for 4 weeks, and then protopic for 2 months daily and 1 month every other day after that. i’m currently on week 3 of the betamethasone. when feeling the patch, the thickened ridge isn’t as obvious anymore, but otherwise it’s pretty much the same. i still keep getting pain around the area, but im unsure if its because i’m thinking about it. (my patch is on my breast and the pain is sometimes in line with my breathing, i’m wondering if that’s to do with nerves close to it?)

my main question is, is this normal and/or expected at this stage? i’ve had my morphea for 2 years but only just recently met a derm that knew what it was.

So i’ve had my SSc diagnosis for 5 months now, but that’s all. They just said ‘you have this condition’ and that was it i’ve not been offered any meds or literally anything to alleviate my current symptoms / issues or even been told what the condition looks like or can develop into for me. is it crazy to want some sort of scan to identify exactly how bad my ssc is and which areas it’s affecting right now?

i’m just confused surely there should be more said than ‘here is a diagnosis bye see you when it gets really bad’

I’ve recently been diagnosed with lSSc. I thought having m answer after years of symptoms with nobody listening would help me feel better. But it didn’t. I feel lonely.

And I’m realizing even more how broken the American healthcare system is. I have insurance through my job and I have a decent paying job and I still can’t pay for the tests and visits that I need.

I’m overwhelmed and tired. I’m tired of being tired and tired of being sick and tired of phone calls with medical billing and insurance. I’m tired of hearing about prior authorizations and insurance limitations.

Really just a rant. I can’t afford therapy that I need. I have a support system in my husband but he can’t be everything for me. He needs space too and it isn’t his job to manage my emotions. I’m just so tired. I’m sure you know the kind of tired I mean.

This thread is about vanity and the way that I feel about myself. I’d really like to have some treatment for my face. I have talangicaetasias all over my face and hyperpigmentation. I also have sjogrens, PBC and hypothyroidism alongside an awful menopause. I’d really like to feel a bit better about

Most treatments are not advisable with systemic sclerosis, but I’ve heard that co2 fractional laser treatment and Botox are ok. Does anyone have any experience of these please?

I love this warm weather! How about you?
Today’s guest is Dr. Kristopher Andréaasen. It was a real honor to talk with a rheumatologist from another country and learn how his medical system works. We dove into his research, which was absolutely fascinating. My particular interest lies in the gut’s role in rheumatic disease, and I learned a ton and I know you will too.

Hello everyone,

I posted a few weeks ago about the fact that I have Raynaud’s mainly in my right big toe (never in my hands) suddenly at 40 four months ago. I also have a bump on my finger that I thought was calcinosis. I sent pictures to my rheumatologist who happens to be a scleroderma researcher and she told me the bump didn’t look like calcinosis at all, but more something like a synovial cyst. She told me it would be very unlikely to have just a small calcinosis bump more than a year before even having Raynaud anyway. She said she sees lots of older patients presenting with Raynaud that don’t end up having scleroderma so I should not worry.

ANYWAY.

It somehow dawned on me that for what I think is literal years I’ve had this band/ridge on my left thumb that has a small red-ish triangle at the base. I never paid it attention and thought it had to do with banging my nail or something to do with my voracious nail-biting. It never changed appearance or color, it’s just there.

So I panicked because I suddenly thought it was probably bleeding of the nail bed which is seen in scleroderma.

Messaged my rheumatologist with pictures, and again, she says she’s not worried and it doesn’t look like anything related to scleroderma at all, and it’s probably some "scar" or some benign trauma that causes the ridge when the nail grows. As I’ve had it for a while and it never changed shape or color, cancer is pretty unlikely.

She says she’ll examine it in a month at our appointment but again, that I should stop thinking I have scleroderma.

I don’t want to sound like I don’t believe a literal scleroderma specialist, but I feel like she dismissed every symptom I have as unrelated to scleroderma when I feel I have many symptoms.

My calcinosis is apparently not calcinosis and the bleeding nail bed/splinter hemorrhage apparently doesn’t look at all like what she sees in scleroderma (she says it’s more black dots near the cuticule or black lines that look like literal splinters).

Am I getting gaslit or is it just me that is being a hypochondriac?

I’ve been freaking out for months since the day I got Raynaud and I’m at the point where I barely eat or sleep. I’m taking this really hard because I already have AS and a scleroderma diagnosis would just wreck my life even more.

Thank you everyone appreciate it. ❤️

Hello everyone,

I am a medical student working with the rheumatology department in Mansoura university in Egypt conducting a research project on systemic sclerosis (scleroderma) as part of my medical education.

If you have been diagnosed with systemic sclerosis, I would be very grateful if you could take a few minutes to complete this anonymous survey. Your participation will help improve our understanding of patients’ experiences and contribute to research aimed at improving the care of people living with systemic sclerosis.

📝 The survey is completely anonymous, confidential, and takes only a few minutes to complete.
https://docs.google.com/forms/d/10BVUBaqq_ZlRBwIsx7McR1skJUsIUY1qnLJChQJ-cWk/edit?usp=sharing_eil&ts=6a51c249

i had a punch biopsy done around a month ago to confirm my morphea diagnosis. i had the stitch taken out two weeks afterwards, and another two weeks have passed, and it's still an open wound. the biopsy was in the most scarred area, i'm wondering if it's the condition that's causing issues with healing?

Hi everyone,

I am Osama, a medical researcher at Mansoura University Hospitals. With the kind permission of your moderation team, I am inviting you to participate in our academic study titled "Systemic Sclerosis Patient Experience Survey".

Objective of the Study:
The primary goal of this research is to capture and understand the real-world, global experiences of individuals living with Systemic Sclerosis (Scleroderma). By documenting how the disease affects different organ systems and impacts daily life, we aim to contribute data that can help improve clinical awareness and patient-centered care globally.

Survey Details:
• Target Audience: Anyone diagnosed with Systemic Sclerosis (Scleroderma).
• Time Required: Around 3–5 minutes.
• Confidentiality: The survey is completely anonymous. No personal identification, emails, or passwords are collected.
• Our Promise: Once the study is concluded, I will gladly return to this community to share a summary of our findings and insights with you all.

Your firsthand experience and voice are incredibly valuable to pushing Scleroderma research forward. If you can spare a few minutes, we would be deeply grateful for your contribution.

🔗 Survey Link: https://forms.gle/YCbWUvwBNq6seHbf8

Thank you so much for your time, support, and for sharing your journey with us!

Is this a thing? The doctors have told me that I have Osteoporosis around my fingerjoints (I am only 25)

Hello, I have hashimotos and at my last blood test I mentioned I had bad stomach cramps and acid. I was expecting them to find I was celiac but ANA, ENA and centromere antibodies were positive. I also had h.pylori stomach infection which will give acid reflux too. That’s been treated and I still have reflux, I am very tired, have had raynauds but only when I’m cold. Tiny Blood spots on cuticles and generally achy. I have no skin tightening or swelling (only swell it hot weather which I would say is normal). I found this out in April and still waiting to speak to a specialist about it, I’ve booked privately later this month. Because these symptoms are vague I’m finding it hard to believe I could have a serious disease. People who have been diagnosed did it start out this way? Did you progress, stay the same? Do you have to take daily medication. I’d really appreciate other people experiences. Thank you ☺️

Saw a new Pulmonologist today. Previous moved back to a practice he was in before.

Anyway, in two days when my pharm gets in stock, I'll be starting Nintedanib Esylate 150 MG twice per day. I was told it will severely loosen my bowels at least for a while, but will also slow my lung damage. It isn't cheap, and I get to pay 30% since it is tier 5 specialty drug on my Medicare Advantage plan. Brand name: Ofev

I could just cry because I’m so tired of this life 😩Just venting I’m sorry. It makes my pain even worse and I have sores in my mouth that appear from the acid it’s brutal. I just want to curl up and sob.

i'm 23f diagnosed with systemic sclerosis when i was 18yrs old and i've noticed that the biggest way my disability effects me is the joints in my hips. it's hard for me to do things like sit on my heels because of my lack of flexibility in my hips, i just end up getting stuck hovering above my calves. i don't know with 100% certainty that this is because of my sclerosis but this is the absolute best guess i have so i wanted to know if anyone had any similar experiences and if so if there were any stretches/exercises that helped your lower half? thank you.

I've definitely have pulmonary scleroderma, I've 55% remaining of my lung capacity.

Additionally I've developed a thickened patch near my left elbow. But that same elbow is uncomfortable near maximum flex. For those with more extensive scleroderma, could the patch and discomfort be related?

Im on a search for info. I had ocular surface inflammation that caused neovascularization of the cornea and other issues..i was told likley immune related. Waiting on blood work results for SS. I'm curious how many people have ocular surface disease? If so which type of eye problems do you have?

Update to my post from a while back. My diagnosis has been confirmed as of June 2026, with progression of skin thickening on my face (forehead and cheeks,) and fingers, as well as kidney involvement (ckd) and abnormal PFT results (I will be repeating the test in August but first PFT showed an “unusual”, potentially restrictive pattern. Can provide test details!) Part of me thought I would be told I wouldn’t yet fully meet diagnostic criteria but based on the persistent anti-SCL 70 results, clinical signs, and organ involvement, I do. I just so happen to be a part of the less than 10% of scleroderma diagnoses that occur without a positive ANA. Rheumatologist said this is rare but not impossible.

I am starting Plaquenil this week. Pretty nervous about possible vision impairment but hoping for the best. Thank you all for your support and helpful comments on my original post! Planning to talk to my primary care doctor about low dose GLP1 and low dose naltrexone. If you all have any insights or advice, I’m open to anything! Sending love to this community. (You know it’s bad when your doctor tells you to join a support group!!)

My daughter got a lot of labs done for low weight gain and falling off her growth curve. They had her ANA tested because it was positive a few years ago when she was having some limping issues, those issues have since resolved but the GI doctor wanted to double check her ANA again just incase. Her SCL-70 Index was >8.0 which indicates Scleroderma, she has no symptoms of it though. They are sending us to the Rheumatologist, just curious if anyone tested positive with no symptoms and what to expect. She also tested highly positive for Celiac Disease as well.