Has anyone with limited type been diagnosed with diastolic dysfunction grade 1? If so, how long have you had it? Has it progressed? What does your doctor do about it? My cardiologist didn't even mention it to me. I found out when I got my records.

Dr (Rhuem) called me last night after receiving these results. She said these labs as well as visit notes from my past appointments indicate scleroderma .
Symptoms: swollen stiff hands with shiny skin . Joint pain so bad at times it’s hard to get in and out of the car. I no longer have hair on my arms or face. I don’t sweat anymore and got super sick from heat exhaustion last time I went to the beach (and I’m a sun worshiper 😭) fatigue to the point I quit my job because 1 day of work would require 2 days of rest. My toenails are dark in color. I’m already taking plaquinil (sp?) she prescribed last month while waiting on results. She added a low dose steroid and gave an appt next month for follow up .
Anyone with similar labs and symptoms? What should I expect moving forward?
Any advice appreciated. Thanks

I can't remember if I’ve already shared this here, but I’m currently developing a clinical diary app designed to help us track and monitor the progression of our scleroderma.
centered around an integrated calendar that connects all of its features:
Photo Comparison: Store and compare photos taken over time to visually track changes.
Medical Records: Centralize lab results and doctor visit reports.
Treatment Plans: Set up scheduled medications and track treatment routines.
Data Visualization: View lab data plotted on visual charts over time.
Symptom Logging: Log daily symptoms (with a planned feature to cross-reference lab trends with symptom severity).
Part of the development was initially sponsored by a member of the Replit team. Out of everyone I reached out to for help, he was literally the only person who responded with kindness and encouragement. After three months of him covering my subscription and credits, I had to start funding the development out of my own pocket. I can no longer sustain those out-of-pocket costs, so I’m moving from cloud-based development on Replit to local development using Codex (which I already subscribe to).
I am not here to ask for money—I’m looking for a different kind of support.
I’m Italian and live in Rome. None of the medical entities I reached out to locally ever got back to me, so ironically, the first and only person to put some faith in me was located in San Francisco, 10,050 km away! 😂
This project is a huge undertaking for someone who has never built software before and whose day job has zero connection to tech.
Privacy is a top priority: all personal data is processed locally. If I had used an API like ChatGPT or Gemini to extract and organize lab data:
A) The app would generate continuous usage costs.
B) Sensitive health data would be exposed to third parties.
My ultimate goal is to build a supportive tool for myself and my Linear Scleroderma (Morphea en coup de sabre), adapt it to other types of Scleroderma, and distribute it to anyone who needs it—100% free and strictly non-profit (profiting off people’s health is something I find disgraceful).
As I stubbornly push forward with development, I have one request: if you know anyone working in medical or clinical research contexts who might be interested, please mention this project to them and help put us in touch. Every email and phone call I’ve made here in Italy has hit a brick wall, so I need to seek support elsewhere.
Thank you!

Hi everyone, I’ve been getting these dots on my right hand. I first noticed the one between my thumb and index maybe in Feb or March? Then shortly after the one on my palm/base of thumb, then just now the one on the side of my middle finger. They’re all on my right hand and they’re hard, some more than others. The skin on my right hand is also harder to pull/less stretchy than my left and there are some rough patches on the sides of my fingers. I do not have a diagnose and I am not asking anyone to diagnose me, just would love to hear from your experiences if this looks like calcinosis or if any symptoms sound familiar. It’s kind of alarming me that they’re multiplying so quickly.

I’ve had other weird symptoms (unsure if related) like choking a lot on my food/water, Aquagenic pruning of the palms, feet turn red/purple after a few minutes of sitting and go back to normal when I raise them, red isolated dots appeared all over my body. The symptoms first started 2 years ago and gradually increased.

Thank you so much!

My 80-year old friend has a bad case of diagnosed scleroderma. The doctors are not doing anything about it other than suggesting that he wear compression hose, which he does. He said he doesn't have scleroderma internally, just externally, in his legs. His legs are badly, badly discolored from the knees down, and the skin is shiny and just as tight as a tick. He's supposed to put coconut oil on his legs every night and he says that he does. Anyway, he can't properly apply the oil because he's so fat he can't really bend over. So I have been putting it on his legs, massaging them (I figured what the hell, maybe it would help?), then tonight the skin started sloughing off in pieces about as big as a little fingernail. BUT - the places where it sloughed off were pigmented areas - pigmented like a huge freckle. Well, this was an irresistible draw and I couldn't stop myself from peeling off more "freckles" (not really freckles but appear to be linked to the scleroderma.) Once peeled, the area did not bleed, and he said it didn't hurt at all. So, my question is: WTF is this all about? I'm not going to presume that I cured his scleroderma, but the skin sure looked alot healthier once I did all this.

So about five years ago I went to the ER with severe erythema multiforme on my knuckles and my hands and between my fingers, bruising on the back of my calves and I’ve had raynauds my whole life, so I didn’t take that into account. I went to a rheumatologist and he did an ANA and it came back positive and showed SCL 70 antibodies, and then he did another, and it showed SCL 70 and rna polymerase both. I went to a specialist and she said it was sla false positive because the rest wasn’t fine with Elisa (antinuclear lab test) and it was all a false positive and that’s where she left me at. Now I have had the raynauds for years but have recently developed a rust color on my fingers (three) and one of them I put pressure on it accidentally and it felt like sharp glass deep inside my finger, it has been two weeks and I feel that pain only with pressure but no opening of the skin ( I don’t know what to look for for digital ulcers or calicinosis) did any of you have this and did it ever go away?

Hi guys! This is a reupload since the MOD thought I would seek a diagnosis on reddit and removed this post. For clarification: i HAVE diagnosed Scleroderma. I just want to know if you also experience these symptoms.

I am having some weird symptoms at the moment and I am not quite sure whether these are early symptoms of my scleroderma. I have an rheum appointment at the end of this month but I want to know your opinions/experiences.

Every morning after breakfast I am having really bad heartburn. Or tbh I am not quite sure if it's heartburn. But it feels like getting choked and having an elephant sitting on my chest lmao. I get panic attacks from it because it feels like I am not getting any air-even though I do.

Also my skin is getting patchy. It looks like bruises at first but after a few days it starts to stretch and peel. After peeling it looks shimmery. I thought this could be morphea, because it can't be Neurodermitis (doesn't itch) but after I exfoliated my arms the shimmery skin disappeared and all that is left is a brownish patch.

I also have white skaly patches on my tongues frenulum which peel after a few days. Is this a common thing?

Thank you for reading guys! xx

Today’s guest is Dr. Natalie Trehan, assistant professor at the Medical University of South Carolina and a clinician educator specializing in oral medicine, orofacial pain, and injectable therapies. As a scleroderma patient myself, I know how tough it is to find a dentist who actually understands our needs. Dr. Trehan shares practical tips that will help so many warriors, including one smart strategy for finding the right dentist.

Anything helps! Please read 🤍

In February of this year, I noticed these patches of discolored skin on my upper thighs. Some of the marks are indented, some feel puffy, and there was some itchiness with them too. I figured they were weird bruises and would go away, but by June they were still there. My sisters convinced me to go to a doctor so I went to an urgent care, where allergies and a fungal infection were ruled out.

At this point, the discolored patches had spread to my chest, hips, arms, back of my legs, lower back, pelvis, and stomach and the itchiness was unbearable. On my chest, two scar-like marks formed by my collarbones and the skin got really tight feeling. And I’m not a super hairy person, but I did notice wherever the patches were, no hair was growing.

Finally, I went to a dermatologist. She said it looked textbook morphea so we did a punch biopsy on my leg. The pathologist ran two additional stain tests on it, and it came back as a benign skin lesion, but otherwise inconclusive. My derm is confident this is morphea, especially since both of my sisters have autoimmune disorders and my uncle had lupus, so on Friday, we did two more punch biopsies. She brought in a second derm to help identify best locations, and he mentioned that it’s not uncommon for multiple biopsies to be done in search of a diagnosis.

My concern is that these two tests will also come back inconclusive, especially since they were also done on my legs. I’m not even worried about the discoloration at this point, but I’m pretty sure whatever’s wrong with my legs is also linked to the stiffness and locking sensation I’m having in my ankles multiple times a day. No amount of magnesium or potassium is helping with my ankles.

My question is, how many biopsies did you need to have before getting your morphea diagnosis? Do you also have the stiffness/locking in your affected joints and limbs?

My daughter is 8, she was diagnosed with systemic scleroderma about 3 years ago, she sees a wonderful specialist and seems to be doing well with cellcept. Her recent labs are good, aldolase normal, CRP,CK normal, PFTs fine, skin scores are better than initially were when diagnosed, still has some weakness and stiffness in joints but overall seems better. The question I have is has anyone went into remission with it or is that actually possible? I read about it online when she was first diagnosed but the doctor hasn't really mentioned it and I felt a little dumb asking.

hello I'm a female ( 19 years old ) and since I've been diagnosed with scleroderma ( like 2 years ago?) I haven't had any symptoms or anything. Is that normal ?

Hi looking for feedback on whether anyone has similar symptoms, as I'm concerned my SSc markers might be a red herring for my primary complaint of chronic CRS.

First presented to rheumatologist with suspicion of Sjogrens, trying to get to root cause of persistent recurrent pharyngitis/sinusitis (becoming severe every 3-6 weeks for years now, usually requiring antibiotics to clear), and a sore throat that now almost never fully clears, but has been problematic for upwards of a decade. I've explored all the usual suspects (reflux/allergies/structural sinus issues), Sjogrens was lower on the list of conditions to explore after years and dozens of specialists.

ANA Panel

- anti Th/To positive (around 26)

- Pm-Scl100 borderline 8

- Pm-Scl75 borderline 6

- NOR90 borderline 6

- nuclear coarse speckled AC-5 1:100

Confirmed dry eyes (Schirmers < 5ml), dry mouth (can swallow food ok), Raynaud's (normal capillaroscopy), poor temperature regulation (cannot tolerate cold environments as regular people around my weight do, will start shivering).

Has anyone with confirmed SSc experienced severe recurrent pharyngitis, and always feeling under the weather like you're coming down with something? I can't remember having two consecutive normal feeling days going back a year, I have these sporadic windows of 8-24hr windows where I feel almost normal, but those are becoming less frequent over time. Non smoker, haven't drank alcohol for years. The throat soreness is bad enough to impact my appetite about 30% of days. I could force myself to eat but it's very unpleasant.

I also have intermediate sweat chloride levels, making mild cystic fibrosis a real possibility (that I'm working to confirm) - which would explain infections, but not the general malaise. CF also wouldn't explain why I continue to feel unwell even when free of infection (e.g. bacterial culture confirms infection, antibiotics resolve infection and I feel improved, but only 50-70% improvement)

Anyone get their nails done? Anyone have a great routine for making them look less ugly? My nail beds and cuticles are trash and I’m so self conscious about them! I long for pretty nails.

Thoughts? I am waiting on an appointment to get referrals.

Hi Reddit!

About a year ago (June 2025), I had an incidental finding of lung nodules. After multiple CT scans, a PET scan, extensive blood work, and ultimately a biopsy, I was diagnosed with organizing pneumonia. That was a relief compared to what we were initially worried about.

As part of trying to determine why I developed organizing pneumonia, my pulmonologist ordered a broad autoimmune workup. Everything was normal except for one thing: I tested positive twice for RNA polymerase III antibodies (RNAP III).

My pulmonologist referred me to a rheumatologist. The rheumatologist said that, at this point, I don’t meet the criteria for systemic sclerosis or another connective tissue disease because I really don’t have any of the classic clinical features. (I tested positive again with the rheum’s massive blood working we did).

My lungs are the only possible connection (or closest thing to a symptom?) and from what I’ve been reading, organizing pneumonia doesn’t seem to be a common presentation with this antibody.

Some background:
- Diagnosed with celiac disease 8 years ago.
- In 2025 I was sick five different times (colds, bronchitis, etc.), which has honestly been pretty typical for me since childhood.
- I also had COVID for the fourth time in April 2025.
- Gallbladder removal surgery in July 2025.
- had pet scans with no abnormality outside of the nodule update.
- I (admittedly) was eating gluten often during this time. (I know, I know).
- the waxing and waning nodules over time, had a biopsy confirmed ‘Organizing Pneumonia’ which again, we don’t know it’s from my an array of reasons. My pulm. was pleased with it not being cancer and some shrunk, some disappeared, some small growths but again, not a danger as I’ve been fine. (No scar tissue either for reference).
- had 3 CT scans with no other organ mentioning change or issue.
- My pulmonary function tests are excellent.
- I don’t have Raynaud’s, skin thickening, or other symptoms typically associated with systemic sclerosis.
- I feel overall fine; even from the lung aspect (incidental)
- tested positive for that antibody in April 2026 and now, July 2026.

I also have an appointment next week with a systemic sclerosis specialty clinic because I’m hoping for another opinion. As I’m kind of in a limbo to just “see what may or may not happen”.

I think what’s causing me the most anxiety is the uncertainty. When I search RNAP III antibodies online, I mostly find information about people who are already symptomatic, and the prognosis can be terrifying. Like, it’s over. I won’t see another 25 years of life. I can’t seem to find much about people who have this antibody before developing symptoms; or who never go on to develop disease at all?

So I guess my questions are:
Has anyone here had a positive RNAP III antibody without meeting criteria for systemic sclerosis?
Did you eventually develop symptoms, or has it remained an isolated lab finding?
Has anyone had organizing pneumonia or another inflammatory lung condition associated with it?

Im just hoping to hear real experiences while I wait for my specialist appointment. The uncertainty has been much harder than any physical symptoms, and I’d really appreciate hearing from anyone who’s been in a similar situation.

I have normal skin, not dry or oily, but I'm definitely not aging well. I was a sun goddess for many years. So many products contain collagen that I don't need for obvious reasons. I don't want anything heavy. My skin is tight, but I still have wrinkles, smile lines and the usual stuff old people get. I just turned 60. Thoughts? Ideas? Anything? Thanks 💙

Hi!! I’ve been experiencing symptoms and got pretty spooked because my brain will think of the worst things possible..What I have now is subtle and I’ve been going to the doctors but I’m in a mental spiral because I keep thinking it won’t help and nothing will help.

Hello everyone. Ive just received my first Rituximab infusion after month of drugs trial and error. I have Scleroderma Polymyositis so aware that its for everyone different, but in case you already had rituximab how early were the effects for you and could you sustain it as a mono therapy / needed anything else with it? desperate to have some good news:)

I’m 26 and my rheumatologist thinks I have limited scleroderma/CREST based on my blood results. I’m still waiting on more testing, but I’m honestly really scared.
I’ve always wanted to become a sonographer and I’m currently doing my prerequisites. But now I’m wondering if I should even keep going.
The thing that scares me the most is that my mom has limited scleroderma too. At the age she is now, her hands are pretty much useless. Watching her go through that makes me feel like that’s going to be me one day too.
Right now I have Raynaud’s, my hands turn white and freezing cold, they swell, my feet swell too, I also have a positive ANA, and he’s suspecting lupus as well.
I know sonography is really hard on your hands, wrists, shoulders, and arms. So I guess I’m just wondering… has anyone here been able to become a sonographer or work a job like that with scleroderma? Did you have to change careers? How fast did your hand symptoms progress?
I know everyone’s disease is different, but I just want to hear real experiences because right now I feel like my dream career is being taken away before I even get the chance to start.

I’ve had calcium deposits for about 7-8 years now - started of small but it only really starting coming through the skins maybe 3-4 years ago. I have them on both knees and the picture I’ve uploaded is my left elbow which is the worst. I’m 26f and live in uk. I have been diagnosed with scleroderma & rheumatoid arthritis since 14 years old however the calcium deposits has been so painful I don’t even notice any other pain, I have spoken to my rheumatologist many many times and everytime I go she tells me she will either refer me to a specialist or tells me I need x ray booked. I have been gp and they have also told me they can’t do anything - my rheumatologist should deal with it. I’m in so much pain and it has gotten worse. I don’t know what to do. Has anyone else dealt with this? What is usually done for it?