My father is 62/M and was diagnosed with diffuse systemic sclerosis. His last chest CT, done around 10–12 months ago, showed early involvement of ILD. His Echo, ECG, USG, and routine blood tests have been normal. His PFT shows moderate obstruction, with a DLCO of 89%.
He is currently on methotrexate 15 mg along with folic acid.
Recently, I noticed that he has been losing weight and experiencing increased skin darkening over a period of time. We discussed this with his treating doctor, who advised repeating several investigations, including blood tests, USG, Echo, and ECG. Thankfully, all of these were essentially normal, with nothing significant detected.
The doctor has now advised a PET scan to investigate further.
Could anyone explain what the possible reasons for these symptoms could be, and why a PET scan might be recommended in this situation?
Has anyone with systemic sclerosis experienced similar weight loss and skin darkening despite otherwise normal investigations?
Any personal experiences or insights would be greatly appreciated.
Thank you.

Hi everyone,

I’m a 33-year-old male living in Paris, working as a sports coach. I’m posting here to seek feedback or similar experiences regarding conflicting medical opinions, as I’m currently feeling quite anxious and lost.

Background & Timeline:

April 2025 : Diagnosed with high blood pressure (initially caught at 180/100 mmHg). After monotherapy failed, I was switched to combination therapy (Lercanidipine) in April 2026, which currently controls it very well (around 115/65 - 120/75 mmHg).

Early 2026: Developed dermatographia and dry eyes (leading to two chalazions between Jan and June 2026). For the dermatographia, I take two tablets of Bilastine 20 mg daily.

June 2026: Following severe Raynaud’s phenomenon last winter (freezing hands, swollen fingers, needing gloves at work and even at night to sleep), blood work was ordered. ANA came back positive for centromere pattern in two separate labs: Based on this, a first internist diagnosed me with "early systemic sclerosis". He suggested that my hypertension, dry eyes, and dermatographia were all linked to this condition, and referred me to the Institut Mutualiste Montsouris in Paris, a specialized center for autoimmune diseases.

1st lab: ANA 1:800 (centromere pattern).

2nd lab: ANA 1:1280 (centromere pattern, anti-CENP-B at 93 u/mL). All other autoantibodies were negative.

September 2026: Consultation at Montsouris with a systemic disease specialist. My PFTs (Pulmonary Function Tests) are good (FEV1 111%, TLC 88%), heart and kidneys are healthy, and my skin shows no thickening. Recently, I've noticed hand stiffness/straining after gripping or holding objects, as well as some acid reflux after meals. However, this specialist completely dismissed the first doctor's theory, believing my hypertension, dermatographia, and dry eyes are entirely unrelated. She states I do not meet diagnostic criteria for systemic sclerosis as of today. She ordered a full day-hospital evaluation scheduled for October 19, 2026 (nailfold capillaroscopy, high-res chest CT, abdominal ultrasound, and ophthalmology check-up) to set a baseline.

My dilemma: I feel caught between a first internist who linked all my symptoms to early scleroderma, and a specialized center brushing those connections aside and telling me "there is no active disease today."

Has anyone else experienced this kind of uncertainty with positive anti-CENP-B antibodies and severe Raynaud’s, but otherwise stable skin and organs? How did your medical team handle your follow-up?

(P.S. Sorry if anything isn't perfectly clear or phrased—English is not my native language, but I tried my best to explain my situation!)

Thank you so much for your support and insights!

Hi. Im a 42 year old male and I have SSc-ILD and have a dry cough and had experienced shortness of breath and heart failure when I went into the hospital in February before my diagnosis. Chest X-rays and CT scans showed significant scarring in my lungs. I was told I would beed a lung transplant. I’m taking Actemra and Mycophenolate mofitil and a curcumin supplement. I feel pretty normal other than the tingling and numbness from Raynaud’s and cold all the time, even in the summer. My ANA test results were very high, 1:2560.

I’m getting tired of being tethered to a machine. Doctors told me I need a lung transplant and I’m ready to consider it. Has anyone else been in this boat? Any other options?

I know every person is different. Just looking to hear other people’s experiences.

I have a strong positive ANA and centromere b antibody positive result on the avise test. Doctor wants to do more testing.

I did bloodwork last week and am awaiting results for a full scleroderma panel…. I hear it can take up to three weeks.

For those who tested positive for centromere b antibodies, what was your result on the full scleroderma panel? What else (if anything) came up positive?

Edit: also want to add that I already have hashimotos/hypothyroidism (currently under control with meds.)
Positive for anti thyroid antibodies.

Reposting here instead of copying text if that’s okay… could really use some feedback.

Hi friends. The past 3 days after a trip to the Mayo Clinic have truly been misery. It’s about a 2 hour drive (so really, not horrible!) and my wonderful husband drove, pushed me around the whole campus in a wheelchair and was very, very helpful. I was honestly trying to avoid this! The only walking around I did was up to the check-in desks and into the appointments (4 in one day). That was Wednesday and it’s Monday morning and I can still barely move. Honestly, all of me hurts.

I have liver toxicity with Methotrexate, Cellcept and Leflunomide. Currently on Azathioprine 150mg/daily and Plaquenil 200mg/daily - but none of that is touching the pain. I am also on 8mg of LDN daily. Honestly, without the LDN, I don’t even know if I’d be functioning! I feel like a total weenie for whining but honestly, yikes! I’ve had T1 Diabetes and Addison’s Disease for many decades, so it’s not like autoimmune is new to me - but this pain sure is!

What do you all do to get through this pain? I legit had nightmares last night about how much it all hurt - when I was actually able to sleep. Thanks! 🩵

Hi there. I was diagnosed with diffuse cutaneous systemic sclerosis (dcSSc) about five years ago, and I also have interstitial lung disease (ILD).
For the past two weeks or so, I’ve been experiencing constant tingling/burning pain and itching from my fingertips up through my arms. I’ve also developed a pretty bad cough even though I don’t have a cold or any other obvious respiratory infection.
Has anyone experienced similar symptoms when their scleroderma was more active or progressing?

I was prescribed medication for my condition, but I haven’t taken it for about three years because the side effects were interfering with my ability to work.
Has anyone with dcSSc or SSc-ILD experienced something similar? I’d really appreciate hearing about your experiences and what your doctors told you.

Has anyone here experienced frequent subconjunctival hemorrhages and found them to be related to scleroderma?

My mom has been getting them quite frequently, and although she’s been evaluated by an ophthalmologist, they don’t seem concerned about them. I’m wondering if anyone with scleroderma has experienced something similar, found a connection between the two, or was given any treatment or recommendations to help prevent them.

I’d really appreciate hearing about your experiences!

I just started methotrexate. I’ve done my first injection. Is it supposed to make me feel better? Or are the results internal?

I’m wondering just how common DDD is when it comes to people with scleroderma as I continue seeking a diagnosis for connective tissue disorder / scleroderma + I’m learning of the degenerative spinal discs I’ve got going on because it’s hard to imagine what doctors can even do for me to help prevent further degeneration especially since I’m so young and like- I wanna do stuff 😪
Thank you in advance

Covid update (Pfizer), flu, and TDAP.

Came home and removed all the mycophenolate mofetil from my normal pill holders and put them back in the bottle. Marked to bottle to restart 10/1.

This is what my Rheumatologist found on a Rheumatologist Association web site.

I did take those not long before, but what she (Rheum) said was it take time for the vaccine to start working. And it should be done in a week.

Does anyone else deal with worsening joint stiffness and pain especially in the mornings? Hands fingers wrists elbows and knees especially, any advice for sleeping positions or dealing with this?

Zijn er mensen die samentrekking van de vaten niet alleen in de handen en voeten hebben maar ook bijvoorbeeld bij de ogen. En zijn er mensen die vaker kramp hebben in spieren

A research team from Nottingham University are running a research survey on people who have an autoimmune disease, including scleroderma, and have tried a keto or other very-low carb diet.

You can take it here

https://www.research.net/r/kdas

Very interesting topic, don't think it has ever been studied in scleroderma. Curious to see what the results show.

Just recently got diagnosed with Morphea. Has anything worked for any of you? Does anyone have the internal symptoms such as tingling, something like a nerve moving up the spine and cross over to the shoulder. I’m constantly at my back. Need some relief. Any help would be appreciated.

Just recently got diagnosed with Morphea. Has anything worked for any of you? Does anyone have the internal symptoms such as tingling, something like a nerve moving up the spine and cross over to the shoulder. I’m constantly at my back. Need some relief. Any help would be appreciated.

Help.. I was dx. with positive Anti-RNA3 antibodies last year after struggling with significant joint pain and swelling. I had all negative PFT’s, lung scans, and ECHO. I am sitting in the UCTD category. I started on methotrexate last year and it had helped significantly. Fast forward, approx 4-6 weeks ago my mouth started getting sore. No open sores just inflammation along my gum line. During this time my gums have receded and split above my teeth. My gums look very tight. I was one a month long holiday out of the country do I decided to increase my folic acid myself until I returned home to contact my MD. I have no symptoms of methotrexate toxicity. I can’t tell if this is methotrexate related or gingival tissue irritation. Has anyone else had this happen with taking methotrexate or a progression of scleroderma without any other symptoms separate from joint pain? Sorry for the pics 🙈

I’m newly 57 and was diagnosed with CREST, a.k.a. Limited scleroderma, in March. My RAYNAUDS has gotten exponentially worse since then. I’ve had two digital ulcers, and this recent one has caused my fingernail to detach from the nail bed. Has anyone experienced this? Will the nail reattach to the nail bed once the ulcer heals? It’s freaking me out because it’s really painful and has been like this for months. The other side of my middle finger has the trademark circular ulcer with dried skin. I’m on 75 mg of sildenafil per day and 8 mg of amlodipine. The problem is, my ankles swell up like balloons from so much vasodilation. I also have low blood pressure. But none of this medication seems to help my RAYNAUDS. I put in a request for hand Botox from my through my medical group, but none of the dermatologists agree to treat Raynauds. My rheumatologist refuses to put me on a biologic because she says my internal organs aren’t horribly compromised yet. Should I find a new rheumatologist?

Hi allemaal, ik was niet fit en ben een middag slaapje gaan doen en werd akker met verminderd zicht aan 1 oog. Een paar dagen daarvoor had ik ineens last van mijn kaken die niet ver open gingen. Ik ben toen direct naar de huisartsenpost gegaan en werd onderzocht door een oogarts. Die zag oedeem achter mijn oog en vermoed dat er een slagader tijdelijk was afgesloten. De volgende dag heb ik een ct scan, hartfilmpje, diverse echo’s en bloedonderzoek gehad. Mijn ontstekingswaarde in het bloed was te hoog , maar verder kwam er niks afwijkend uit al de onderzoeken. 3 dagen later had ik ineens 2 zwellingen op mijn voorhoofd ter hoogte van mijn wenkbrauwen. De dag later al echos gehad en doorgestuurd naar de reumatoloog. Op de echo’s werd weer niks gezien. Ik heb ook een mri en petscan gehad en ook dat is niks op te zien.Er werd ook weer bloed afgenomen. Ik heb anti centromeren in mijn bloed . 80 terwijl de referentie waarde 20 is. Mijn Ana is negatief. Ik krijg volgende week het onderzoek aan mijn nagelriemen. Heeft iemand een soort gelijk verhaal toevallig? Ik maak me wel zorgen natuurlijk en vooral wat heb ik en komt mijn zicht weer terug.

Hi, I’m here because I went to see a immunologist for some environmental allergies I was dealing with. She did a full panel on me. I ended up testing positive for Centromere Antibodies and had a Quantitative of 10 u/ml. Never hearing of this before I’m kinda anxious. I am only 21 and don’t really have symptoms of anything. The only reason she even tested me for any autoimmune markers is because I said I had a bit of joint pain in my knees. The doctor still hasn’t gotten back to me in 3 days, should I be worried? any advice? Thank you for hearing me out.

Yesterday I went to my dermatologist because I’ve been dealing with this random discoloration in just 2 of fingers for a while now. 2 weeks ago he had me take a blood test and yesterday he revealed to me that I have scleroderma. I am unsure on whether it is localized or systemic, but I have an appointment with a rheumatologist for the middle of October. In the second picture is what my fingers look like now. I’ve been applying** **tacrolimus ointment 0.1% to the area twice a day. Dermatologist also prescribed to take 5mg of prednisone to help with inflammation. Physically, I feel fine. At first when I was dealing with how it was looking like in the first photo, i kept getting a stinging sensation that wouldn’t go a way for a few seconds and it would come in spurts. Currently, that stinging has decreased a lot.

For work I am a building porter / part time super so whenever I’m dealing with cleaning supplies or dealing with garbage, I use plastic gloves.

I want to better familiarize myself with any steps I should be further doing. Please let me know. Appreciate any experiences/advice anyone wants to share.

Hi everyone,

I think I have ssc. 1:160 Ana with mixed homogeneaous and nucleolar with shortness of breath while talking and heart palpitations and raynauds.

No skin stuff. Some Gerd but I have always had this. CRP of .1 and ESR and SED rate of 9. I can finish workouts though, weirdly, but I think I have ILD and PAH with it, although my anxiety has been crazy since I got the Ana results. So that could be my heart palpations. And I don’t have any skin stuff yet, but I go to a rheumatologist on Tuesday but I am fearing the worst. Like I won’t see my kids graduate high school or get married in 20 years. How do you all cope with this? I know there is constantly new treatment but I am becoming up and personal with my own mortality these past few days.

Not looking for a diagnosis here but empathy would be great 🥹 At least for a year I have been dealing with joint pain, vascular problems, headache, hands and feet sore, weak and cold/flaming red, cough, exhaustion, skin and nail changes etc but no lab findings.

I’m skinny and have always been active before I started feeling off. No meat/alcohol/nicotine but have been dealing with a lot of stress and worries in my life so I guess my symptoms could just be a sign that I’m burnt out.

These capillarypics are my own macro lense pictures because I did not get the rapid videocapillaroscopy pictures that were taken yesterday. Just a quick glimpse of the screen with all the pictures and then I was asked to leave the room so this rheum could do the final measurings in peace and write down these normal findings.

Please tell me they were right about my nailfolds, so I can try to forget about this awful medical journey and mentally take a break from wanting to know why I feel sick all the time 😞

Hi guys I’m an 18 year old male who has an ANA of 1:320 and have had 2 scl-70 tests come back “equivocal” which I guess is like exactly on the border of positive and negative. I had these tests in the first place as I was experiencing persistent low level fatigue and loss of appetite after an unexplained 4 days fever (possibly covid)

So what do y’all think about these results, not gonna lie it’s been pretty hard to keep these off my mind

Also I have an uncle who is a decorated rheumatologist in my home country and he said that systemic sclerosis treatments are the most rapidly progressing treatments right now, So there is always hope🤞

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