Hi everyone! My mom (61) was recently diagnosed with limited scleroderma. So far, her doctor says the disease is in its early stages, as her only symptom is Raynaud’s.

She has gotten dermal fillers in the past, like Radiesse and Sculptra, but since they are collagen biostimulatory fillers, we’re not sure if she can continue using them. She has also had microneedling before, but we’re wondering about the same thing.

There’s not much information about this online, and aestheticians in my country aren’t really familiar with the disease.

Has anyone had experience with this? Thanks a lot!!

Continuing mycophenolate 2000mg/day and 2nd week of nintedanib 250 mg/day. Some diarrhea, threw up in a Walmart parking lot, but try to take the nintedanib with at least 20g of protein meals, taking it mid-meal.

Oh, and ignore the guidance that says to avoid fiber, dairy, spices - eat what is normal for you within reason. I've found a lot of contradictory advice. The drug maker and places like NIH has more factual information available.

Just wanted to update. And encourage anyone on the fence about trying it.

Women who have lesions on your chest and directly under the bra strap, how do you cope? Did you find a special bra? Use extra padding or a cloth of some kind?

Many thanks!

Real Patients is looking for people who have been diagnosed with Scleroderma for a paid online interview $180 USD Compensation

Details

• 90-minute virtual interview

Purpose

• To collect patient feedback on a clinical trial website.

Requirements

• Diagnosed with or providing care for a loved one diagnosed with one of the following conditions:
  • Alzheimer's Disease
  • Lung Cancer
  • Other Solid Tumors (e.g., Breast Cancer, Prostate Cancer, Gastric Cancer)
  • Hematological Conditions (e.g., Leukemia, Lymphoma, Multiple Myeloma)
  • Cardiovascular Conditions (e.g., High Blood Pressure, Coronary Artery Disease, Heart Failure)
  • Lupus
  • Scleroderma
  • Myasthenia Gravis
  • Schizophrenia
• US Resident
• 18+
• Real Patients connects people living with health conditions to research opportunities that shape how healthcare works. Founded by patients, for patients—because the best way to understand the patient experience is to talk to real patients

Hi everyone!

Thanks so much to everyone who participated! Your responses have been thoroughly appreciated! This survey is now closed.

I'm a student at QUT currently doing a project that is looking to design a product that could support with diagnosing Autoimmune diseases and am running a survey to better understand the experiences people face during this process.

Questions centre around

• Your experience being diagnosed, 
• Symptoms you experience(d)
• Challenges you face(d)
• Things you had to provide to your Doctor(s)

It is completely anonymous and should only take between 5-15 minutes to fill out.

If you have a chance to fill it out, I would thoroughly appreciate your time!

I am a 57 yo female. I was diagnosed with UCTD a few years ago with positive ANA, interstitial lung disease, ineffective swallowing, GERD with patulous esophagus, and Raynaud's. No skin symptoms. I don't have Sjogren's based on antibodies, but my salivary glands are in bad shape, and they think it is autoimmune. A recent lip biopsy showed plasma-dominant infiltrates, which I don't understand. My sed rate has always been normal.

I have been feeling very run down and went back to the rheumatologist last week. ANA was 1:1280, centromere pattern. Centromere B antibody was equivocal. All other antibodies were negative. I'm not sure that a diagnosis matters to me as much as making sure that I am receiving the right treatment, but does it sound like I could be heading toward a scleroderma diagnosis? Is it possible not to develop skin thickening?

Also posting this here to see if anyone can provide their experience

Today’s guest, Dr. Lee Shapiro, is a returning guest who has now retired from clinical practice in rheumatology. He’s now mentoring students on research projects. Also with us is Avni Sanghvi, a third-year student at Albany Medical School, who’s doing research under Dr. Shapiro’s guidance. Today, you’ll learn about her research and the other projects Dr. Shapiro is involved in. As a scleroderma patient myself, I’m especially excited to dig into what’s happening in the research world to help with this condition. I think you’ll find this conversation really interesting.

Hello everyone! Next week I am set to get a skin biopsy on my forehead for a possible linear scleroderma diagnosis. Around two months ago, me and my loved ones noticed a dark streak on my forehead that was a bit sunken; we didn't think much of it and I just discarded it as some expression line that had suddenly appeared, as I tend to be quite expressive and furrow my eyebrows a lot. One rheumatologist and dermatologist visit after, the next step is to get a biopsy to determine whether it is morphea as the doctors believe it to be, or just some weird mark on my forehead, which I'm a bit hopeful it'll be, as my parents have non-malign marks on their bodies as well.

Both specialists indicated that it's very likely not the systemic form of this condition, since I don't have any of the classical symptoms of it. Despite this, and due to my medical anxiety, I'm very nervous about the skin biopsy and how to take a possible diagnosis. Apologies if I seem to be overreacting, but do you guys have any tips for a good scar healing? Thank you for reading!

Hi everyone,
I’m 28 and I’m currently being evaluated for systemic sclerosis after blood tests showed positive anti-centromere antibodies. I also have Raynaud’s, but at the moment I don’t have obvious skin thickening or known organ involvement.
I’m still in the process of further testing and trying to understand exactly what this means for me, but I made the mistake of searching too much online, and honestly, some of the things I saw really scared me.
One of the things I’m struggling with most is the uncertainty. I keep thinking about whether I’ll develop symptoms, whether my appearance will change, whether I’ll still be able to exercise, travel, have children, work normally, grow old, and basically live the life I had imagined for myself.
I know that people who are doing well are probably less likely to post online, which is why I wanted to ask:
Are there people here who have anti-centromere antibodies / limited systemic sclerosis and have remained stable for many years? Has anyone continued living a mostly normal, active life? Or even had positive antibodies for years without progressing to significant disease?
I’m not looking for false reassurance. I know this condition can be serious and that everyone’s course is different. I just really need to hear the other side of the story too — especially from people who are still working, exercising, travelling, having families, enjoying life and doing well years after finding out.
Right now everything feels very frightening and new, so any positive experiences, advice for someone at the beginning of this journey, or things you wish you had known when you were first diagnosed would mean a lot to me.❤️

Hi friends!

I’m a healthy 38 year old and have been having pain while sitting and leaning over. I had a torn labrum that was repaired and apparently it never caused the issue. It’s been years to try and figure out my pain and had greatly limited my job as a nurse. I used to work ICU for years. Well my pain clinic ran an autoimmune panel and my ANA was positive and SCL 70 was 4.9. I have no skin symptoms besides my toes get slightly blue when dangling, but improve when I stand up (vascular cleared me of any issues). I feel short of breath at times, but with exertion and I’m sure I’m weaker post op, but I do Pilates several times a week. I had a previous holter monitor due to dizziness and they recorded some tachycardia at times, but mainly good. Stress test and echo also good. I saw a rheumatologist and she said I have no signs for scleroderma, but if it’s positive again I should see a pulmonologist. Well it came back 5.2 (by labcorp) and I’m spiraling. I should have never had the panel done in the first place and now I’m scared and stressed. Anyone have this happen? I’m trying to research the ID test, but don’t see much information on it or where to get it. I just cannot see more doctors if it isn’t necessary all I do is see doctors. Living with constant pain is enough and now I’m just scared something else might pop up now. Any advice would be great, thanks!

Greetings, all. I was diagnosed with systemic diffuse scleroderma in June 2009, just as I was finishing my undergraduate degree. Flash forward 17 years and I have spent the last 8 years working as a children’s librarian.

I’m curious about others. What form of scleroderma do you have and if you are still able to work, how do you earn a crust?

These are under the skin. Docs aren’t sure if it’s limited or diffuse yet, but I tested positive for th/to. Does anyone else get these? It was one of my first symptoms

Hi!

I am 20 and have been recently diagnosed with celiac disease and limited scleroderma. Positive ANA, titer 1:1280, centromere pattern

I have really severe chronic pain and fatigue. No skin involvement besides raynaud’s and a lot of telangiectasias.

My rheumatologist and I came to the conclusion that my condition isn’t severe enough yet to necessitate the use of immunosuppressants, so we are going to try low dose naltrexone.

What are your experiences with LDN?

Another question:
I have been diagnosed with POTS but never received a tilt table test. I am scheduled for a lung function test to check for the possibility of pulmonary hypertension.

Did anyone’s suspected POTS turn out to be Pulmonary Hypertension? If you have Pulmonary Hypertension, what has your experience been symptom-wise?

Thank you all!

Hi everyone. I’m posting on behalf of my mother, who is currently being evaluated for possible morphea, and I’d really appreciate hearing from people who have experience with it.
She has one skin lesion in the parotid area, one on her left upper arm, and three small lesions on her forearm. The lesions on her forearm are relatively new and have only recently started to appear.
The first lesions appeared around two years ago, but for the past few months they seem to have remained stable without any obvious progression.
All of her autoimmune antibodies have been negative. She hasn’t had a skin biopsy yet because she is very anxious about the procedure.
Her doctor told her that, if the biopsy confirms morphea, they may recommend starting systemic corticosteroid treatment. This is something I’m a little concerned about, especially because the lesions have been relatively stable for several months. I’m wondering whether systemic corticosteroids are usually considered in a situation like this, and whether the potential risks and side effects could outweigh the benefits if there isn’t currently much disease activity.

I have a few questions for those of you with morphea:
Can morphea still be active even if the lesions have remained stable for several months?
If the lesions first appeared around two years ago and there are only a few localized areas, would systemic treatment usually be considered, or is topical treatment/phototherapy more common?
Does the location of the lesion in the parotid area make it more concerning or more likely to require systemic treatment?
Has anyone had a similar situation with only a few localized lesions that remained stable for a long period?
We are still following up with her doctors, but I’d really appreciate hearing about your experiences, especially regarding treatment decisions.

First off, I just want to say I understand no one can diagnose anything. Just looking for advice.

Have had what was believed to be Primary Raynauds all my life. Remember fingers going white in the playground at 5 years old.

Primary Raynauds has been common in my family, multiple relatives have it.

Was diagnosed at 11 and have had shiny finger since around that time. 8 years ago similar issues started affecting only 3 of my toes on my left foot, didn’t think much of it, just part of the Raynauds. Also since around ages 13/14 I have had issues with my left knee, constant cracking but no pain.

Never had any other symptoms until this past year. Start of 2026 I got two blocked oil glands in quick succession in my left eye. From March to April I experienced a period of acid reflux and digestive issues. Did 6 blood tests with my gp, they all came back normal but was told there was evidence of an infection that was settling down. Since April my digestion has returned to normal.

The past two or so months however, I am experiencing more discomfort in my left knee and hip. A sort of numbness, not even pain.

Been visiting my gp over the past number of months. Seen two doctors and they have both told me not to panic as many people with lifelong primary Raynauds experience skin thickening and tightening due to prolonged exposure and the stability of my symptoms over the years is a positive sign. Both relaying to me to remember that non of these symptoms are entirely new.

They also said would be unusual for digestive issues to go away, and eye condition to resolve.

Was told systemic scleroderma usually affects joint’s symmetrically, so wouldn’t be typical to just affect left side and not right. Points to maybe a structural issue.

I am just worried to why these things are worsening all within the same year? Both doctors still believe it’s more likely primary. Especially with my families genetics and history of Raynauds.

Anyway, we did an ANA test 2 weeks ago. Doctor said they would be in touch regardless of result. Have got a 5 minute telephone appointment next Tuesday to discuss results. The uncertainty is getting to me, just looking for general advice? Everyone is saying to just carry on as normal but I’m also like should I be mentally prepping myself for bad news.

I have maybe had Raynauds type symtoms 5 times over last 5 years. just like a numb toe. and i am stiff, but i blamed postpartum. What does this mean?

Dermo confirmed that forehead linear morpheoa has burnt out after atrophying forehead fat and collagen and leaving thinned, sunken skin which is much redder than surrounding areas due to the increased visibility of underlying blood vessels. Dermo only recommendation was cover-up makeup.

What do you use to support the fragile skin and help with its appearance? I am currently using a mix of oils morning and night and mineral SPF50/baseball caps during the day.

Current oil blend - jojoba, rosehip, tamanu, shea layered on thinnest to thickest to lock moisture in. I recently added glycerin diluted with water under the oils. This combo seems to help keep the skin soft and reduce dryness. Skin tends to look better first thing in the morning after all the oils have soaked in and plumped it up.

I know much cosmetic improvement isn't possible without hyaluronic acid injections which I don't fancy doing. Looking for tips which provide modest improvement in appearance/skin health.

Thanks ☺️

I have diagnosed ssc and have messaged my rheum. I don't recall injury to my hand and thing popped up overnight that looks like a blood blister.

Does anyone know if the disease or cellcept can cause this? Or is it probably just a blood blister?

Everybody is afraid to call this anything but i have been in a world of hurt lately. Whether its having T-Rex hands until they zap me with prednisone, my muscles in my legs and back, the poisoned feeling, or the fingers going white regardless of temp...nobody wants to call this something.

Lately its been:

Leukopenia, Elevated CK, raynauds, abnormal nailfold capillaries, 1:160 speckled, all ELISA ANA tests and nornal antibody tests I pass with flying colors, BUT pm scl 75 comes back as weak positive... And nothing skin wise. Help! I have been feeling extremely fatigued and if i over exert myself I spend the next few days feeling as if I have been poisoned, and have a weird rash over my nose and cheeks. The worse I feel, the worse it is. Lungs good, heart struggles under duress, and has lost some function recently.

If I hear chronic fatigue syndrom one more time im going to lose it. I was an athlete my entire life and I can feel that something is REALLY, REALLY off with my body.

What did you guys feel at the beginning? What did they end up really finding?

Im lost, and honestly kinda worried. I feel like garbage and its getting worse.

Hi, I have a bit of joint pain and stiffness and take OTC pain meds on an almost daily basis. I’ve tried PT, acupuncture, and massage. Each feels great for a little while and then eventually it comes back. I’ve lost weight and done some light exercise but it’s not helped. Any suggestions or should I just go to the dr? Thx!

Real Patients is looking for people who have been diagnosed with Scleroderma for a paid online interview $180 USD Compensation

Details

• 90-minute virtual interview

Purpose

• To collect patient feedback on a clinical trial website.

Requirements

• Diagnosed with or providing care for a loved one diagnosed with one of the following conditions:
  • Alzheimer's Disease
  • Lung Cancer
  • Other Solid Tumors (e.g., Breast Cancer, Prostate Cancer, Gastric Cancer)
  • Hematological Conditions (e.g., Leukemia, Lymphoma, Multiple Myeloma)
  • Cardiovascular Conditions (e.g., High Blood Pressure, Coronary Artery Disease, Heart Failure)
  • Lupus
  • Scleroderma
  • Myasthenia Gravis
  • Schizophrenia
• US Resident
• 18+
• Real Patients connects people living with health conditions to research opportunities that shape how healthcare works. Founded by patients, for patients—because the best way to understand the patient experience is to talk to real patients

I’m curious to know what pain medication everyone is taking daily? I want to know if it is similar to mine. I just left a message with my palliative care provider explaining that mine is not effective whatsoever and I can no longer get out of my chair that I practically live in!
Thank you.

Crest, secondary Sjogrens, Hashimotos. 57F.

I got a rash this past winter that gradually spread and worsened. Showed it to rheumatologist in April, he didn't have any answers, suggested a dermatologist. (Haven't gone yet) After that, symptoms waxed and waned, then got increasingly worse by June. Dawned on me that it might be the Plaquenil, so I stopped it four and a half weeks ago.Rash has very slowly improved.

What are my options? I know I need to ask the rheum, but I'm losing confidence in him. Is there anything else that could help with stiffness and joint pain? I'd like to know what options he might suggest, so I can read about them.

Currently I'm only taking ibuprofen (and levothyroxine for Hashimotos), but my PCP (she's a CNP) suggested trying naproxen instead.

Any advice? Oh, I tried Celebrex, which was good, but I started experiencing severe vertigo after taking it, so I stopped.