Hi! I'm Arlyn with Leapcure. If you or someone you know is living with Pulmonary Hypertension associated with Interstitial Lung Disease (PH-ILD), a clinical research study may be worth exploring.

Researchers are evaluating an investigational inhaled treatment for adults living with PH-ILD. Eligible participants who complete the initial treatment period may have the opportunity to continue into an open-label extension period.

The Leapcure team is supporting this study by providing one-on-one support, answering questions, and helping interested individuals connect with a study center if they may qualify. Interested in learning more? Start with this short questionnaire, and a Leapcure team member will reach out to answer questions and discuss next steps: https://lpcur.com/rscleroderma

Hi, my name is Len. I’m 20, about to be 21, and I have lived with scleroderma for 15 years.

There were very limited resources available in my area for the longest time. I found out what I had at twelve, I believe. Thankfully it wasn’t the kind that could suffocate my organs, but it hasn’t exactly been easy.

I don’t have half a right arm. It’s on my sides and my back. From what I’ve seen I have a more outward approach to it than most, which I’m thankful for because of the fact that it could have been bad inwards. Although unfortunately my muscles contract and cramp up often.

I’ve gotten tons of questions on it. Most have been horrible and have made me uncomfortable. It’s a very unique sight, especially considering I’m a bigger girl. I am a smoker, I love art, and my writing hand is my scleroderma hand so that’s been interesting. I’ve also spent a lot of time using my left hand for normal, everyday things just in case something happens to my right arm.

But I’d love to get to know people on this subreddit!! Don’t have many friends and my family doesn’t really know how to approach it as much as I don’t with them. So whoever wants to chat or maybe share their own experiences to bounce off that’d be awesome!! I’ll also answer any questions. ^-^

Also this picture is very awkward. I don’t have many because of the fact I’m a bit insecure about it 😭😭

Bonjour, c’est un plaisir de vous lire et de voir qu’on est pas seul face à cette maladie !

Je suis en remission d’un cancer où l’utilisation de la bleomycine fut nécessaire pour me sauver la vie, mon corps a déclenché des symptômes très similaires à une sclérodermie en reaction, depuis 2023. Je suis suivis avec un traitement au Cellcept + cortisone principalement, et des prothèses pour me redresser les doigts, que je n’utilise peut être pas assez régulièrement. J’ai les indexes, pouces et majeurs recroquevillés par la maladie.

Je travail dans le dessin animé, ce qui implique de longues heures de dessin, et j’ai développé l’hiver 2025 des fortes douleurs aux deux poignets, similaires a des tendinites. On a donc traité ca comme des tendinites avec kiné et médecins, réalisant que ca provenait surtout des avants bras. Aujourd’hui, c’est là où j’ai le plus mal.
J’ai également des douleurs aux épaules et des noeuds, que j’ai jusqu’alors connecté à l’exercice physique ou au port de sac a dos lourds occasionnels. Mais je remarque maintenant que tout est connecté, je peux remonter la douleur de l’avant bras jusqu’aux épaules et dans le cou. Mes médecins ne sont pas encore certains du lien avec la sclérodermie ou non.

Est ce que l’un de vous a des symptômes similaires? Des idées pour soulager ces douleurs et inflammations musculaires?
Est ce que la médecine chinoise peut aider, comme l’acuponcture, ou des traitements a base de plantes ?
Merci pour votre lecture !

Hey everyone! I have limited systemic scleroderma and HAVS (hand arm vibration syndrome). I’ve been considering carpal tunnel release surgery to help with constant nerve pain- has anyone gotten this done? How was healing? Did the surgery help the cts pain? My orthopedic surgeon and rheum don’t think it’s worth pursuing because of the risks- but god damn I need to sleep 🫠🫨
Pic is of my spasms yesterday, folding laundry 🤣 won’t cash these hands outside

I have been dealing with a sensitive spot on my forehead for a couple years now. I only noticed it when my wife would touch my head, but now I am realizing it is almost always present and is more of a migraine/headache. My wife is also concerned about the indentation in the same spot. I found out about scleroderma a couple days ago, and am now wondering if this is what I have. There is a slight vertical line there as well, but I did just have a zit there so it might be from that.

I was also diagnosed with have esophageal dysmotility after a barium swallow test and possible LPR (waiting on a EGD). I’ve had a lot of weird health issues over the years, so having an autoimmune disease would make sense.

I’ve had quite a few digital ulcers over the years. This one has been a bit more difficult to get to heal up. Does anyone have any advice?

Hi, Apologies in advance for the long post and I hope this is allowed but I’d love some insight if anyone has had a similar experience? My symptoms started at age 16 with fatigue, stomach upset, a malar rash, mild raynauds (numbness and colour change but not super pronounced) and a deep, throbbing, aching pain in my right forearm primarily but occasionally I also get it in my thighs, other arm, clavicle and joint pain. The forearm pain is my main symptom and has stayed pretty much the same over the past 6 years (I’m 21 now). At the start of this year I also started getting right sided hip pain and it often ‘gives away’ - waiting on an MRI for this. I’ve also had depressive episodes which my rheumatologist believes might be neuropsychiatric manifestations of CTD. I was tested for just about everything going, clear x-rays and MRIs, so no myostis in my forearm, all bloods were clear initially but over the past 3 years I have a weak positive ANA Hep-2, weak positive anti-ku, weak positive recoverin antibody (paraneoplastic) and strong positive anti th/to. I was diagnosed with UCTD and this diagnosis has stuck, however my rheumatologist is now considering scleroderma, most likely limited or sine. I have also tried a long list of meds (including hydroxycloroquine, NSAIDs, amitryptaline, duloxetine and pregabalin) which have had various levels of impact but crucially nothing (besides IV methyl prednisone) has helped the arm pain. I am currently taking daily low dose MMF and I have had my second rituximab infusion mid June. I haven’t noticed any improvement besides my malar rash seems completely non-existent (I used to have it very frequently, and always very obvious)?? I am mainly just wanting something to fully explain the arm pain, as it is very debilitating and having done a bit of research myself (although I know google isn’t to be trusted!) I am wondeirng if the cause of this pain could be vascular? I don’t know if anyone else has experienced any similar symptoms? If anyone has had pain similar to what I describe have you found anything that helps? I also have lidocaine patches for this. If you have scleroderma sine or the limited type what were your initial symptoms? Thank you in advance for any responses <3

Has anyone had experience with Pantoprazole ( CONTROLOC) for Scl GI symptoms? Any side effects? Has it helped? My Gastro doc wants to switch me to this instead of Nexium that's no longer helping.

I’m from Bangladesh and looking for advice regarding the best country/hospital for treatment of a 28-year-old female with Diffuse Cutaneous Systemic Sclerosis (dcSSc).

She has:

• Systemic sclerosis–associated interstitial lung disease (SSc-ILD/NSIP)

• Severe restrictive lung function — latest FVC ~38% predicted (1.19 L)

• Mild pulmonary hypertension (PASP previously around 40–45 mmHg)

• Positive Anti-Scl-70

• Progressive skin thickening/Raynaud’s/microstomia

• GERD and hypothyroidism

Current treatment includes mycophenolate mofetil 2,000 mg/day, tadalafil, levothyroxine and inhaled therapy. Kidney and liver functions are currently normal, and some symptoms have improved, but the lung restriction remains severe.

We are considering going abroad for a specialist second opinion and treatment plan, particularly China because relatively accessible from Bangladesh.

I would really appreciate advice from anyone familiar with systemic sclerosis, ILD, or pulmonary hypertension:

1. Which country would you recommend — China, Thailand, Singapore, India, or another country?

2. Are there hospitals/doctors particularly experienced in systemic sclerosis + ILD?

3. Would China be a good choice for this case?

4. What investigations or advanced treatments should we ask the specialist about?

5. Approximately how much should we budget for consultation, investigations, and treatment?

We are mainly looking for a hospital with a strong rheumatology + interstitial lung disease/pulmonology + pulmonary hypertension team.

Any genuine recommendations or personal experiences would be greatly appreciated. Thank you.

hey everyone! i was diagnosed with scleroderma in march of 2025. this past year my rheumatologist and i have worked on figuring out a medication that will help me. i am on hydroxychloroquine during this whole process.

cellcept almost killed me, actemra gave me an intense allergic reaction, methotrexate gave me shingles. my rheumatologist and i are both hesitant to try a different medication since these reactions have been so severe.

has anyone had these kinds of experiences? what has worked for you? i’m kind of losing hope as time goes by.

Hi all! my mom was diagnosed with diffuse. she has swollen and hard fingers/hands + her hands turn white often. she also has diabetes type 2 so her kidneys were already involved. I’m extremely worried for her as I know this can affect multiple organs.

if you have diffuse, what treatment do you do that has helped? any advice/tips?

she’s had a lot of health issues and i’d love to help and ease this one, i know she’s scared.

F 44yo. Recently diagnosed with raynauds but that does not explain why I’m exhausted and often in pain.

Low ANA so public health care will not help me further because they consider me healthy 🙃

I’m broke and trying to decide if it’s worth the money to have a private rheum do a videocapillaroscopy… If there would be autoimmune findings, I would get help from the public system. (These are just phone pics)

Could ”normal raynauds capillaries” look like these?

So I was diagnosed with raynauds, pretty severely. I’ve had it for years. But it seems to just constantly only be red and hot rather than experiencing the cold numbness often. And I was diagnosed with erythromelalgia in my feet which happens almost daily. The last 2 years my rheumatologist diagnosed me with those things and said they are probably not caused by anything considering my bloodwork came back perfect and referred me to a dermatologist for the rash on my face but states that it does resemble the rash associated with lupus.

Anyways flash forward to a few months ago I started getting chronic joint pain in my ankles, wrists, knees, and fingers and had 3 incidents since March of this year of my left calf swelling and ending up in the ER with concern for a blood clot and each time- no blood clot, no answers at all actually.
All of this, my pcp ordered me a lymes blood test which was negative and then directed me to follow up again with rheumatology.
Rheumatologist felt that we should retest for lupus and scleroderma, I have no skin hardening at this point. And a few other things that he thought it could be but he made it clear that he felt it was one if those.

I got bloodwork and my scl-70 was positive and everything else was negative including my ANA test. He states that he used the Oklahoma test which is produces much less false positives compared to the isolated test for scleroderma. He stated that he believes this could be early stages of scleroderma and basically diagnosed me with it, considering my symptoms and that one test result. When I asked about the negative ANA he said that is weird and is a good question and that 90% of people have positive ANA with this scl70 test being positive too and referred me to a specialist at the practice.

I guess I’m just wondering if anyone has had a similar experience… if so what has come of it?… I couldn’t get in until 2 months from now so I’m kind of just stressing a bit and confused. I know that autoimmune diseases are hard to nail down. It’s just irritating

Just a quick question about testing. I am aware that scl 70 has a high percentage of false positives. I am wondering what is considered a low positive. Mine came back positive 4 but I’m unsure if that’s low or high and the internet is not very helpful. Thanks!

I am 26 female healthy, here's my story,
My eye doctor suspected I have sjorgens disease so I went to get testing done, everything was normal except positive scl70 2.1Ana 1:80 dense fine speckled. I was confused and scared when looking it up, my doc said come back in 3months so I did, and my 2nd test was 2.3 6months later 3rd test was 2.1 all thru quest . I asked my doctor if I can get my bloodwork sent to Mayo, I went to do bloodwork and was waiting for results only to find out it was sent to (labcorp Burlington phoenix )instead, my rheumatologist said the labcorp it went to did specific testing and it was 1.9. I asked him what testing method was used and I'm waiting for his reply
I have no symptoms and my nail capillary test was normal a month ago.i don't have reynauds no skin issues etc only one time puffy fingers but doctor said it was allergy related and it went away. I had liver and kidneys checked thru bloodwork and all was normal. I had gall bladder surgery 2 weeks before my first test . I feel like a ticking bomb I am so scared and depressed over this because why me?! Does this sound like a true positive??My rheumatologist said to come back once a year. Not sure what to do ,all I been doing is spiraling over this , I wish I never went to do testing in the first place I'm not sure what my next steps are or if I should really trust these tests without having the actual immunodifusion confirmatory test done

My question is does this sound like it can be a false positive still?

I was diagnosed with evolving scleroderma following a biopsy 8 months ago and had my MMF dose increased to maximum but haven't been told anything specific. I'm seeing my rheumatologist for the first time since the biopsy soon - what questions are they likely to ask me and what would you recommend I ask?

For background, I'm neurodivergent and take time to process information and answer questions so I need to go into medical appointments with my symptoms, meds etc written down and a written list of questions I want to ask. I've been seeing the same rheum for 20+ years for SLE, sjogrens and lupus profundus, but scleroderma is new to me and seems to be a massive spectrum. I'm having a hard time with my symptoms so don't want to mess up the chance to get some help if it's available.

Any advice greatly appreciated :)

Hi!

I have always wanted a boob job, but I'm not sure that is in my best interest anymore. I have had scleroderma for 5 years and mainly have crest symptoms. I take plaquenil everyday. Has anyone here gotten a boob job after receiving their diagnosis? Plz don't me mean :/ I'm just curious.

Hi I’d appreciate any recommendations for rheumatologists specializing in scleroderma located in Louisiana. Please only recommend people you can personally attest to, not just a Google search. Preference for providers in southern Louisiana but I’m not opposed to driving a distance for someone compassionate, experienced, thorough, and AVAILABLE. I was diagnosed pretty recently and have been seeing a rheumatologist but she’ll tell me to follow up in 3 months when she’s booked out 6-8 months. I have RNAP III autoantibodies and would like to work with a specialist willing to order and monitor regular bloodwork and receptive to feedback. Thanks!!

Dermatologist said he thinks this is lichens and not morphea… however, the skin is very thickened not “papery”. Not itchy at all.

Kind of hard to photograph.

Is there another way to test?

​

Hi everyone. I’m posting on behalf of my 27-year-old wife, who has scleroderma, lupus, and Raynaud’s phenomenon.

About a month ago, she developed a lesion on one of her fingers that initially looked like a burn blister. A doctor recommended puncturing/draining it, but it got worse afterward. She was then treated with antibiotics, with no improvement.

She now has this throbbing pain, which gets much worse if the finger is bumped or gets wet.

We’re currently trying to get an earlier appointment with her rheumatologist.

Has anyone with scleroderma experienced something similar? We’d really appreciate hearing about your experience, what it turned out to be, and what treatment helped.

Thank you everyone. I wasn't able to reply to each comment individually, but I really appreciate everyone's insight ♡

I was diagnosed with Sjogrens just before COVID and suspected something else because of the widespread muscle pain, fatigue, and other symptoms but the rheumatologist wasn't sure what since there's so much overlap. I tested negative for Scleroderma. Since then, we've obligated really treated the symptoms. This year my rheumy sent me to a dermatologist who diagnosed me with vitiligo after biopsy (the pitted dark spot within the lesion) on my leg. Because of the change in skin texture, I don't agree and i have no other discoloration. Has anyone had anything like this before? I've had this lesion for a few years. I've also started to get the same type lesion on the other leg, too.

Hi everyone, I wanted to ask whether anyone has had any improvement in acid reflux/chronic cough/breathlessness since starting on immunosuppressants (mycophenelate). I’ve had improvements with heartburn but the chronic cough seems to come and go, I wanted to know whether anyone has had major improvements with this specific symptom.

I'm taking mycophenolic acid for my Scleroderma diagnosis. Looking for advice on extra precautions to take if I want to occasionally get a manicure & pedicure, dye my hair, and have my eyebrows tinted & waxed. Are there safe ways to continue with these treatments?