r/scleroderma

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?

How is it for my fellow Sclero friends in the sun? Do you find the sun good or bad for you? I used to love the sun, swimming in an outdoor pool in the summer. This week I went on a short vacation and found I couldn't tolerate the sun. I felt ill from it. I'm also taking Methotrexate.

Is being in the sun contraindicated for Scler or only because of Methotrexate?

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.

Hi there,

38 yr old here and working with a rheumatologist and hematologist currently. The rheumatologist reported that I am developing symptoms of scleroderma, but have yet to reach the required cut off for a formal dx. In his words, we now wait and see what transpires. He has provided more answers for me than any other provider, so I am honestly thankful for him.

I have a several positive ANAs with one that showed an anticentromere pattern, extensive dry eyes requiring multiple types of eye drops and a brader’s patch nightly. The doctor and I have had two visits so far. One confirming a previous dx at the age of 15 of fibromyalgia and chronic fatigue syndrome, and another that provided a dx bilateral carpal tunnel syndrome.

Our next line of testing is to focus on GI symptoms i.e. dysphagia (which occurs daily for me with pills and dry textures) and to assess the presence of GERD. Previously I had never had reflux but over the last four months it is becoming more common. The question I have is if any of you with a dx experience intense abdominal pains. They are often sharp and shooting, to the point I guard my abdomen. At times when peristalsis occurs I feel each movement which causes much discomfort. Results of a previous colonoscopy have resulted in a dx of a tortuous colon as I “am such a small person there is no room in your abdominal cavity for your intestines.” True and unfortunate story. I follow a strict gluten free diet and practice veganism with an emphasis on a Whole Foods (dietitian by trade.) Yet, when in GI pain my appetite disappears completely as food equates to more pain and nausea. Praise zofran PRN.

Also have any of you also received a dx of cyclic neutropenic syndrome? I have been consistently neutropenic and have leukopenia for over three years. Hematology says it is due to early stage autoimmune disease and rheumatology wants to r/o the cyclic syndrome. Bone marrow biopsies point to no leukemia or production issues.

This has been a hard few years, with much being discovered in the last year. I’m feeling a bit overwhelmed with how complex my medical status is becoming and how quickly my life is changing as a result.

So I saw my new rheumatologist for a consult appointment just last week on Thursday. I was so excited and hopeful to get some answers.

For those that don’t know. I have been living with joint pain and muscular pain + spasms for the past 5 years now. Have been diagnosed with POTS which has helped a lot but now seeking further possible diagnosis for ongoing pain and fatigue.

Went because I had signs of scleroderma as according to my blood work. I’d been seeking a fibromyalgia diagnosis for the past couple years but before I go to the clinic and see a specialist my primary doctor wanted to re-run labs.
ANA was higher than usual (still a bit low) at 3.2 and so it automatically went for further testing. Rheumatoid arthritis labs were negative and so were lupus. My ANA 2 Cascade came back “consistent with CREST syndrome” and anticentromere antibodies marked positive at >8.0
Leading to being referred to rheumatology to explore possible scleroderma. Had to wait a month and a half before seeing one for a consult. After chatting for an hour and then feeling around at my joints she came to the prognosis that I most likely do not have a connective tissue condition but would order further labs to get more specifics on numbers. Otherwise it was mostly chalked up to vitamin D issues with fibromyalgia still a possibility, but to mainly just do PT as a line of treatment with my current vitamin D dosing.

I’ve had GI issues and I asked about them because I was concerned about absorption issues which have shown in the past when I had low iron and after a year of it not going up despite supplements I got an iron infusion. It shot up and peaked at 182 back in August of 2023 only to rapidly fall a month after that test to 38. It rose again in April of 2025 after doing more supplementing and now most recently in May of 2026 it is back down to 47.

My vitamin D levels have been low for forever. They’ve never broken past 30. So I’m supplementing again on a prescribed dose of 10,000 UI daily. But I also just have further GI issues I asked my rheumatologist about how to treat my slow working digestive system & she just said to try dieting. Like cutting out gluten to see about celiac disease or cutting out dairy (I know I used to be lactose intolerant but this is not the same.) or cutting out excess fructose. Which is easier said then done when low income, typically I don’t have much of a choice.
She did question if I had been eating enough and I think so— although I only eat 1-2 meals a day but I haven’t had such issues before until recently it seems to have gotten worse

TLDR: Originally seeking fibromyalgia diagnosis (it is still on the table) & saw rheumatologist with primary care thinking possible scleroderma due to blood labs. Rheumatologist disagrees but ordered further blood work to get more specific information. For now chalks up everything to vitamin D deficiency and has recommended just PT through acupuncture & water therapy.

Hi everyone. I’m 25F and I’m really scared and in diagnostic limbo right now. I’m hoping someone here has a similar story.

Before this:_I was completely healthy 3 months ago, aside from anxiety I’ve had for years. No chronic illnesses.

How it started:

I got a bacterial abdominal infection 3 months ago and took antibiotics. Right after that, I started getting red spots/rashes all over my body. They don’t itch. They show up mostly on my forearms after I eat things like oranges, wheat, bread, etc. But they also come on with heat, cold, or even pressure from clothing and disappear very quickly without a trace. I also have very prominent dermatographism.

Then, 1 month after the infection, everything changed:

1. POTS + Gastroparesis symptoms started- I don’t have a confirmed diagnosis yet. I’m waiting for a tilt table test. I’m constantly bloated, feel full after a few bites, and have this feeling like water is coming back up into my throat. I have an appetite but I physically can’t eat.

2. Rapid weight loss: 16kg / ∼35lbs in 3 months- First because I was terrified of food due to the rashes. Now because of the gastroparesis-like symptoms.

3. Pericardial effusion- They found an 8mm effusion. No treatment was given and it’s now down to 3mm on its own.

4. Raynaud’s phenomenon? Immunologists say I have Raynaud’s, but I’m not sure if it’s that or just from POTS. It happens most when I stand for too long or I’m stressed. My fingers don’t hurt, they just turn purplish. My hands and feet also get cold even when it’s warm outside.

5. Joint pain + Hair loss- I’ve developed mild aching pain in my wrists and hands. And I’m noticing a lot more hair shedding than before.

Labs & Tests so far

Bloodwork is all normal. Detailed immunology panels are normal EXCEPT: I’m positive for anti-PM/Scl antibodies, and my eosinophil cationic protein is elevated.

My rheumatologist suspects VEDOSS but says it might not be that.

Nailfold capillaroscopy showed some dilated capillaries, local edema, and bleeding on one finger, but no typical scleroderma pattern.

I’m terrified. Does anyone have a similar experience? Starting with rashes + POTS + autoimmune markers after an infection? Or anyone diagnosed with VEDOSS or scleroderma who started like this?

Thank you for reading.

I have been lurking here for a few days and am impressed by the compassion and practical advice offered. I am a woman in her 70's who just tested positive and I am overwhelmed.

I was diagnosed with SIBO four years ago. I was treated with antibiotics and have managed to somewhat control it with diet. Two months ago I experienced my first (as far as I know) Raynaud's episode - my right thumb from the knuckle to the fingertip turned blue/purple, no other fingers were affected. The discoloration faded after a few days, but a few days later it returned, lasted a few days, and then the thumb returned to normal. I went to my vascular specialist who ordered several tests including an Angio CT and Abdominal MRI. Both showed nothing remarkable regarding the heart and lungs. He referred me to a rheumatologist.

I saw the rheumatologist last week and blood tests were done. I received the results via an app over the past few days. The SCL-70 value on both the ANA Panel and the ENA Panel is 2.6 with normal being <1.0. All other test results were negative/normal range.

My SIBO symptoms were strong during the week of the test. I had been away and ate things I normally don't, and I have been experiencing a great deal of personal stress lately. The added anxiety because of these test results is not helping.

My follow-up appointment with the rheumatologist was schedule for ten days from now, but I rescheduled it to be in two days - I can not wait that long. I have spent too much time, I'm sure, Googling this disease and it is overwhelming me. It's all I can think about. I decided to not talk about this with family and friends until I speak to the doctor. And so I am talking to you all.

I don't know how much experience my rheumatologist has with Scleroderma, I will ask her. What other questions should I be asking her? Should I look for a gastroenterologist who has significant experience treating Scleroderma patients? I live in the NYC area where two hospitals have Scleroderma centers, should I contact them? Is there anything else I should be doing?

I would greatly appreciate any advice or encouragement you may offer.

My husband got diagnosed 1 year ago. So far he has skin thickening, joints pain and swallowing issues. Nothing in heart or lungs thank God.
Today during a check up his doctor suggested stem cell transplant and that it would stop symptoms for years and improve both skin and joints a lot.
She told us to read about it and think about the possibility until the next check up in fall.
I read a bit and it sounds super scary and there are many risks tied to it, one of them being death.
I want to ask if anyone has had stem cell transplant and please share your experience, recovery and results to help us think through this a bit.

hello, i finally had my dermatology appointment after bouncing between doctors and hospital appointments trying to figure out what my “mystery patch” was. i had documented photos of it changing across the years and showed them. they said they are VERY sure its morphea, and gave me the choice of a biopsy. i asked what that entailed and they said it would just 100% the diagnosis, but they were very sure themselves without it. they also said that because the inflammation is going down that the biopsy might not show much vs what it might have shown a year ago (from my images i showed).
am i dumb for turning it down? they’ve given me a steroid cream to put on it for 4 weeks and then i change to a non-steroid one, so i’m still receiving treatment regardless.

otherwise, is there anything i should know..?

Background: I was diagnosed in April 2026 by my rheumatologist with systemic scleroderma following a year of breast cancer treatment. It seems to have been triggered by Doxetaxol chemotherapy.
My labs from October 2025 showed my ANA Titer Positive & ANA er of Titer of 1:1280 High.
I wasn’t able to get a rheumatologist appointment until this year.
I noticed what I found out to be Raynard’s back in December at a doctors appointment when I was in a cold room.
My rheumatologist diagnosed me immediately with systemic scleroderma from elbows to fingers & knees to toes. The really tight skin is around my ankles; for another post. She put me on HCQ & gave me a prednisone script of 20 mg to calm the inflammation which worked; I’m tapering off that currently.
About two weeks ago, I started to see what appeared to be pimples forming on my index and fourth finger joint’s which eventually turned into scab/ulcers. I put Mupircin bacterial ointment on them for a week & called my rheumatologist last Friday after doing some reading in this group. She wasn’t in but her nurse had me text a picture of my hand.
She called a script in for me which I picked up yesterday called Nitro-Bid. It didn’t hurt immediately when I put it on but within an hour, oh boy! It felt like the pain of getting a sand spur in your foot!
Now, 12 hours later, my finger ulcers which had turned to scabs prior, with one falling off leaving what looked like a tiny hole with pink healing skin; the other a scab kind of hanging halfway off are looking 100% better.
Anyone else being treated with this?
What causes this issue?

would anyone want to be a support ‘buddy’?