r/scleroderma

Sorry this is a bit long - I need to learn how to edit more! So, I have been diagnosed with En Coup De Sabre for the past couple of years, although I believe it's been there for about a decade. It was only when I was having systemic issues that I realised what it was. My rheumatologist first diagnosed it, but I've seen two dermatologists since who confirmed it.

It's on my forehead in the centre and I have some extending onto my scalp along the top and around the back. There are possibly one or two more developing on my forehead and two slightly suspicious looking dents on my chin that are fairly recent. I'm diagnosed with Undifferentiated Connective Tissue Disease and microvascular APS, but symptoms and test results seem to point to Lupus, APS & Sjögrens.

Dermatologist seems to think Lupus too and thought it was a bit ridiculous I'm not on immunosuppresants. He wrote to the rheumatologist to ask them to consider it. Haematology think I have microvascular APS (mAPS), but as anticoagulation hasn't improved my symptoms, they have stopped them and discharging me! There's no clear guidelines on treating mAPS, but immunosuppresants are usually more successful. Rheumatology told Haematology I don't need immunosuppresants, despite having not seen or spoken to me for 8 months (I contacted them twice 6 weeks ago and was sent an appointment in June instead of a phone call to discuss anything).

Rheumatology seem to be doing everything they can to convince everyone there's not much going on and it seems unfortunate I'm stuck with a set of rare symptoms/conditions (I have Erythromelalgia and Raynaud's too). I'm only on Hydroxychloroquine right now and she even said I could stop that if I wanted. I'm probably more worried about blood clots and strokes right now, but I also don't want to end up with several indentations on my face. I'm finding the whole thing quite distressing now as well as feeling very unwell. I am looking for a private rheumatologist more specialised in Lupus & APS.

Has anyone else been in a situation like this or have any suggestions on what to do? Get back in contact with the dermatologist? He said he didn't feel like it was his place to initiate it. This is the NHS in that UK and I already asked for a second opinion a couple of years ago, so I don't feel like I can keep doing that.

I (23f) was screened for ANA’s due to suspecting possible autoimmune disease. I’ve been having excessive fatigue, joint pain, major brain fog and back to back cold-like respiratory illnesses. I’ve also began having tachycardia, shortness of breath, dizziness, blood rushing to my head and mottling in my hands typically accompanied by tingling sensations, that I suspected was blood pooling in my hands however the ER doctor did say it could potentially be Raynauds. They have attributed these symptoms to POTS as of right now. My ANA titer was in the negative range at 1:320, however my Centromere B was >8. From my research it seems this result is rare. My question is, is it more likely ANA is a false negative or centromere B is a false positive? And are there circumstances in which high levels of centromere B are normal and not indicative of an autoimmune condition? Additionally, do my symptoms seem as if they could be the beginning symptoms of systemic sclerosis?

https://i.redd.it/thbofvysbm0h1.gif

I just printed some adapters for the faucets I have throughout my house so my wife can use the knobs more easily (she has a disability). I’m sharing them here in case anyone has these faucets (FV brand, Arizona model) and knows someone who has difficulty turning them or lacks hand strength (people with Rheumatoid Arthritis, Scleroderma, elderly people, etc.).

I recommend printing them in PETG with 0.20 mm layer height, 6 walls/perimeters, and 35% infill.

Here is the link to download for free:
https://makerworld.com/es/models/2789042-adaptador-discapacidad-pomo-grifo-fv-arizona-b1p#profileId-3100960

https://preview.redd.it/ep1ubm1xbm0h1.png?width=604&format=png&auto=webp&s=9a808e28530a57a7ad011e90360e6f222c607466

https://preview.redd.it/f5e357ovbm0h1.png?width=1871&format=png&auto=webp&s=bd3b66c5f0571c2c55a4a54a26f3503412fa57a1

https://preview.redd.it/yh2mwl2zbm0h1.png?width=298&format=png&auto=webp&s=7654d28af3338904020912ad9d80d7f6f2e0b360

https://preview.redd.it/69ht87lacm0h1.png?width=310&format=png&auto=webp&s=4cba8d4a409ab055368d218aa55b8c68c1e84dc7

https://preview.redd.it/ub6db0i2cm0h1.png?width=1080&format=png&auto=webp&s=da2c30b9533439ada775ab0eef2ee10a1ab0c13a

I finally saw a lung specialist for the first time and I see the her again in 3 weeks, which is the quickest ive ever had to see a specialist again. What was even more bizarre was the lung specialist called me 2 hours after the referral was made and booked me in for an appointment within two days.(My dr said i be lucky if it was under 2 months) She only flys in once a months

I’ve finally been referred for further testing(CT, PFT, Breathing muscle testing) to figure out whether what’s happening in my lungs is airway disease, interstitial lung disease or a combination of both. Also to figure out what the Ground Glass is.

They’re also sending me for an echocardiogram because my heart has been compensating for my lungs for so long that there’s concern it may now be under strain as well.

I’ll be starting respiratory physio to relearn proper breathing techniques, and there’s a possibility I may need a machine to help compress/clear my lungs.

I’m also being sent to a larger Hospital for full respiratory function testing because my breathing strength was too weak for the machine in my town to properly register.

On top of that, they’re going to test the muscles around my lungs, I honestly hope it comes back abnormal as they took away steroidal treatment without any replacement or other treatment such as IVIG, biologics, DMARDs

I’m currently on the highest dose of the strongest puffer they can prescribe, but unfortunately it doesn’t seem to be helping much. At this point I honestly don’t know what comes next besides possibly needing oxygen and they have discussed that before.

Recently my GI specialist classified a few of my of diagnoses as severe now. With alot of medications I have maxed out the dosage or am slightly above recommended maximum dose. NSAIDs provide minimal relief anymore, opioids have always had little effect, panadol isnt adequate pain relief and hasnt been in years. I don’t know what to do.

Part of me can’t stop thinking that if doctors had listened earlier, a lot of this progression might have been preventable. Instead I spent years being treated like I was dramatic, attention seeking, or a hypochondriac. I wish things had gone differently, it sucks not being able to do the things that I should be doing at my age, Im not even 18 yet.

My wife was diagnosed with Diffuse Systemic Sclerosis in december 2025, her Rodnan Skin Score is 36.

Her arms are extremly hard and she suffers each time she has a vaccine, blood test or IV: The force that nurses apply to pierce the needdle through the skin hurt her veins once is hit. Also the skin is so thick that nurses can't find the veins in the first place.

How do you cope with this problem? I live in a poor country in South America, maybe in other places in the world, nurses use others methods for patients with hardened skin.

Thanks

Hi everyone,

I’m looking for some advice or shared experiences because I’m feeling pretty stuck and honestly overwhelmed.

I recently had blood work done and the results showed a strongly positive ANA and a very high anti-centromere antibody level (8). All my other labs came back normal. Despite that, I’ve been dealing with real symptoms that are affecting my daily life — significant stiffness in my legs (especially in the morning), some swelling, difficulty walking, and more recently shortness of breath.

From what I understand, anti-centromere antibodies can be associated with limited systemic sclerosis (scleroderma), but my doctor doesn’t seem concerned enough to start any treatment yet and is recommending monitoring only.

The problem is… my quality of life is really declining. The stiffness and mobility issues are making everyday tasks difficult, and the shortness of breath is worrying.

I’m wondering:

- Has anyone had a similar experience where labs suggested scleroderma but treatment was delayed?

- Did your doctor eventually start medication, and what triggered that decision?

- Would you recommend pushing for a referral to a rheumatologist or getting a second opinion?

Also, if anyone has recommendations for good rheumatologists in the Toronto area, I would really appreciate it.

Thanks in advance — hearing from others who’ve been through something similar would really help.

I guess I was blessed to be in peak shape prior to symptoms, previously powering through fatigue and gloves to help grip were all I had to deal with but now GI issues are triggered so any high effort workouts seems no food before or after, sugar free electrolytes and water, UCAN gels seem ok and chicken stock and white bread an hour or so after high intensity efforts, hard to know if that is the “fix” as episodes are not always and other factors are in play. Was just wondering if anyone else has experience as I do not want to surrender but at the same time SBO is painful and probably damaging, recovery is much longer as well. Any tips appreciated!

I just took my first dose of Methotrexate today. I'm nervous about the side effects. Can anyone tell me how soon I should expect to feel any and if it's possible not to have any. Also, how long does it take to see the effect of the medicine? My doctor said it can take 2 months.

For background, I was diagnosed in 2021 with high levels anti PM/SCL 100 & 75 antibodies and lower levels but still high cenp A and RNP A. Diagnosis is systemic scleroderma with minor ILD and overlap of myositis. Used to take cellcept but after a nasty histoplasmosis episode that resulted in 9 day hospitalization 1.5 years ago, I now take plaquenil.

Normally I function pretty well. While there is always some level of pain, I still garden, hike, swim, bike. However, in the last week, I have felt just one shoulder area skin tighten up. Otherwise my overall skin score has been really good. There is also an underlying sharp pain occasionally. I'm hoping it is just an injury, but can tightening happen on only one side and in one location?

I have positive speckled pattern 1:80 but all my specific scleroderma tests have come back negative. I have raynauds every so often but a scan shows I have mild fibrosis in the lungs and inflammation. My capillary test shows ‘active’ stage. DCLO <50% but FVC > 90%. Anyone else clearly have scleroderma but blood results come back negative?

Hello everyone! I have SSc overlap, recently diagnosed. I had multiple steroid injections for joint inflammation, and my life went to sh!t. Blood pressure was getting insanely high (195/130 a few times!) kidney pain, whole body spasms, couldn’t walk or hold my own head up, and genuinely felt like I was going to die. I went to the biggest hospital near me, and I was admitted for “general weakness”. Spent the week getting told I’m not having a heart attack and I should be fine.
My question is- WHY do healthcare workers refuse to give ACEi ? I demanded captopril MULTIPLE times and was refused. The rheum team at the hospital said they were discharging me to return to my usual rheum, with a referral to a scleroderma specialist.
Why, even with a diagnosis, do they drag their heels treating you? Like, how bad do you need to get ? Insanity. How is anyone supposed to live if they’re just waiting for you to die.

hi everyone.

i was diagnosed with scleroderma in march 2025. my disease quickly progressed and i was put on cellcept in october 2025. unfortunately, my body could not handle that medication and i was switched to myfortic in january (which i’ve tolerated excellently).

a few months ago i did PFTs and CT scans which came back as severe lung diffusion and early ILD, respectively.

i saw my rhuem yesterday, very hopeful, because i’ve seen changes in my skin. however, she did not feel the progress was enough, and now that my lungs are involved, wants to get “more aggressive.”

i met with the clinical director and my rhuem, and they expressed wanting me to join a clinical study. i am open to this, but i’ve only been able to find information on this medication and sjogrens.

does anyone have experience with this trial? i need to make my decision this week, so any advice or guidance is appreciated.

thank you. <3

Just got my labs back and I'm kind of spiraling.

https://preview.redd.it/t8qtbt846qyg1.png?width=1154&format=png&auto=webp&s=b959254d249cbcfc731eb65fac5175185819498e

SCL-70 came back at 70 (reference is ≤19). For context: I also have Hashimoto's, a positive ANA with a nucleolar pattern from September, and now I'm sitting here with a result that's 3.5x the upper limit of normal.

Extra context, the Dr that I saw prior to labs coming back told me to "drink more water" and "wear gloves when my hands are cold" and indicated that women are more prone to fatigue from travel (I do a lot for work). I'm wondering what kind of reaction the labs will get and didn't schedule of f/u appt based on how I looked/seemed in the appointment - otherwise I appear very fit/health/am in the gym and take good care of my health, weight and mindset.

Over the past year or so: Raynaud's that became genuinely unmanageable, joint pain and stiffness that came out of nowhere, extreme fatigue I kept blaming on my thyroid/hashimotos - I stopped drinking alcohol and eating gluten in July of last year that helped with a lot of general inflammation, newer I have vertigo, tremors, intermittent skin spots (petechiae), facial flushing, a respiratory illness in December that lasted almost a month where I genuinely could not breathe, persistent weight loss since then that I can't get back, and constantly losing my voice for no obvious reason.

And for anyone who's been in this limbo stage? Am I jumping to conclusions?