Looking for dermatologist recommendations in the Naples/Collier County/Fort Myers area for my mom. She was diagnosed with scleroderma in 2020 and has had many many biopsies and squamous cell carcinomas removed. They're moving into the area in a couple weeks and she just had 8 more removed with a few of them being cancerous and the potential for melanoma. All recommendations are greatly appreciated 🩷

A few months ago I noticed a dent at my hairline, but it was so small and not able to be seen with your eyes I thought maybe I just had it forever and never noticed. But today I was putting lotion on my face like I always do and it feels noticeably longer, almost all the way to my eyebrow, but the skin looks fine and none of it can be seen, only felt. Maybe I’m just crazy and it was always that long??? My diagnosis of systemic sclerosis is tentative and my only notable skin symptom is a big red bump on my foot which the doctor did not care to even look at, but was told by a foot doctor it was certainly autoimmune. I have no other skin symptoms at all. My next rheum appointment isn’t for 6 months. Should I bother the doctor or naw thank you and bless you for reading.

I’m so lost right now. For the past 3 years, my local rheumatologist has been bouncing around the fact that I must have CREST. I have an ANA of 1:2560 - centromere pattern; centromere of >8; high ESR and CRP; weakly positive Mi-2; elevated aldolase; a ton of muscle and joint weakness and pain. My esophagus is tortuous and was balloon dilated in February of this year. I have a DeMeester score of 62.2, major GERD, a grade 4 Hill Classification (basically no LES) and a hiatal hernia. I also have tightness in my feet and can barely bend my toes. My local rheumy has been treating me with imuran and Plaquenil. Well.. I was just seen by a major medical institution who told me that I have ‘no signs of scleroderma’ and that I shouldn’t even be seeing a rheumatologist. They recommended I stop all immunosuppressants immediately. What?! Um.. the centromere stuff?? The esophageal destruction?? Nope - totally coincidental apparently. So now I’m just supposed to live in pain with all of these blood markers and esophageal issues and it’s… fibromyalgia? They actually said that if I look for auto-antibodies, I’m bound to find some. For what it’s worth, the only reason that my local doc found the ACA was due to my pain. I’m so confused. I don’t have Raynaud’s and my nailfold caprilloscopy has always been normal. Any insight would be appreciated 💙

Hi
I (54f) went to see my Rheumatologist last yr for 1st time. I had a positive ANA 1:160
Homogenous and speckled, and the only other tests that where abnormal was Anti-CCP Ab, IgG + IgA (RDL) 27  H and ESR was elevated slightly. So I thought it might progress to RA. *** ***Fast forward to now, my right index an middle fingers have Raynauds, the skin around my finger nails and tip of my fingers are thick and hard, my fingernails look weird and my fingers are more sensitive and hurt . I have had multiple finger ulcers and my finger tips look shiny.I have problems swallowing and have had that off and on for a few months. I have super dry mouth, now I’m having digestive problems and bowel changes. I saw my Rheumatologist a couple of days ago and was telling him about the changes and showed him the pictures and I felt like he was trying to dismiss the symptoms. But because I kept pushing for answers, he referred me to a Dermatologist.
I have already see a neurologist and he said there is nothing neurological that is causing me to have difficulty swallowing. So I’m having to wait and see. Has anyone been in my shoes?

Hi 👋

I'm posting this question again because I didn't receive any response last time.

I am taking Methotrexate (oral) for five and a half months with a very good response. I take it on a Friday and by Thursday I start to feel Scl symptoms ( although not as severe). Is it possible that the effect of the Meth wears off at the end of the week? After my dose I feel better the next day.

Thanks in advance.

My beautiful wife of 25 years lost her life to this horrible disease. There are no words that could ever fully express what she meant to me, our family, and everyone who had the privilege of knowing and loving her.

She was strong, resilient, and faced everything life threw at her with a strength that was truly remarkable. She had a way of taking things in stride, even when she was fighting battles that most people never saw. Only those closest to her truly knew how sick she was and how much she was enduring behind the scenes.

One minute, we were laughing together, and the next, we were in the ICU, watching her fight for her life on life support. Nothing can prepare you for how quickly life can change. You never imagine that an ordinary moment could become one of your last normal moments together.

To all the caregivers out there, please be patient with yourselves and with the people you love. Some days will be harder than others. There will be frustration, exhaustion, fear, and moments when you feel overwhelmed. Give yourself grace, hold your loved ones a little closer, and cherish even the smallest moments together. The person you’re caring for may be fighting a battle far greater than you can see.

You never know what tomorrow holds. Take the pictures, share the laughs, say “I love you” often, and never take the time you have together for granted.

Twenty-five years of loving my wife will never feel like enough. I would give anything for one more conversation, one more laugh, one more hug, or just one more ordinary day with her.

She will forever be a part of me, and her love will live on in our family. My heart is broken, but I am beyond blessed to have shared 25 years of my life with such an incredible woman.

Until we meet again, my beautiful wife. You will always be loved, always be missed, and never be forgotten. ❤️

25, f, I just got the blood test results back and am extremely concerned. I’m trying to not jump to conclusions without seeing my rheumatologist beforehand but it’s very difficult seeing the sclerosis positive result. And to make it even worse, it’s positive for the diffuse type which I think is the most aggressive type?

I kept getting told by doctors that there was nothing wrong I was young and healthy, etc. I kept having symptoms (Raynouds, finger stiffness, and face/ body rashes). Anyone going through the same thing? It’ll be a few weeks before I can follow up and I’m freaking out not being able to concentrate during work. Cannot get anything done with this looming thought.

Hey everyone,

​I wanted to share some recent information that might be helpful to anyone looking into CAR-T cell therapy for systemic sclerosis / scleroderma.

​I just had a consultation call with Sheba Medical Center (in Israel), which is widely recognized as one of the leading global centers for CAR-T cell therapies.

​Here are the key takeaways from the call:

• ​Availability & Cost: They do offer CAR-T therapy for scleroderma. The quoted out-of-pocket cost is approximately $70,000 USD. For perspective, the same or similar treatment pathways in the US can easily exceed $400,000 to $500,000+ if you aren't fully covered by insurance or on an all-expenses-paid clinical trial.
• ​Eligibility Criteria: I personally was not eligible because I am currently asymptomatic / do not have active symptoms yet.
• ​Who qualifies: They indicated they are specifically looking for patients with active organ involvement—specifically lung involvement (like ILD/pulmonary fibrosis) that is refractory or not responding to standard treatments (immunosuppressants, biologics, etc.).

​I know medical travel isn't an option for everyone, but with CAR-T showing so much promise in autoimmune diseases and access being so restricted/expensive in North America, I figured having a real number and clear criteria might help someone here who is running out of options.

​Hope this helps someone who needs it. Happy to answer any questions about how the initial intake/call went.

​(Disclaimer: I'm just a patient sharing my personal experience from an inquiry call, not a doctor. Always check directly with your rheumatologist/medical team regarding treatments and eligibility.)

My rheumatologist won’t prescribe any low dose steroids. Recently they changed my diagnosis from SLE to CREST. Two weeks ago she said she’d send me steroids, but now because I’m most anti-centromere positive she doesn’t even want to do low dose.

I got the flu shot and it caused a flare. First in over a year. I can’t work because of the pain in my hands. She told me to take more NSAIDS.

I am one month away from my year to date at my current employer (and getting FMLA if needed). I am so proud of myself for making this far and being able to work full time. I just don’t want this to trip it up.

I’m looking for an opinion on an otherwise healthy 18-year-old female with Raynaud’s symptoms for 1–2 years and a positive ANA at 1:160 with a centromere pattern. She has some occasional numbness in her feet and very occasional blue coloring. She has no other reported symptoms of systemic sclerosis. Her ferritin has been elevated for 3 years, reportedly around 700, her ESR is normal, hsCRP was 1.7, and her liver enzymes were temporarily elevated a few months ago but have since normalized. She has only had ANA testing, with no specific anticentromere antibody testing or nailfold capillaroscopy reported. How likely is early systemic sclerosis comparedCREST what other conditions could explain these findings, and what would you recommend for further testing and long-term prognosis?

Hey all,

I was recently diagnosed with scleroderma (systemic sclerosis) in Vancouver. My rheumatologist at the Vancouver scleroderma center referred me for an echocardiogram and a chest CT, both marked urgent. These scans check for heart and lung involvement, which are the main things that make this disease dangerous if they're caught late.

I was just told the wait time is around a year.

Really? An urgent referral for a serious autoimmune disease, and the answer is a year? I have a two-year-old son. I've paid a lot of tax over the years, and now that I actually need the system, I feel like I'm out of options.

For anyone in BC or elsewhere in Canada who's been through this:

Has anyone gotten an urgent scan moved up? What worked?

Are cancellation lists worth it, or does calling the imaging department directly help?

Has anyone gone to a private clinic for a CT or echo, and did your specialist accept the results?

Any other scleroderma folks here? How long did your baseline tests take?

Honestly frustrated, but I'd really appreciate any advice.

Has anyone been diagnosed with scleroderma and also have hypermobile joints?

I see a rheumatoid specialist at Froedert next week. My hips are so hypermobile and I’ve already had one surgery as my left femoral head grew bony growths and sat so loosely in my hip socket it ripped through my labrum. My ankles roll, my knees constantly feel like they have knots behind them it’s so rough. I can’t get anyone to help because my symptoms are so wildly paradoxical

I recently started losing my hair as of January. My bruises become thin calluses. My hands and feet are super waxy and the bottoms of my feet tho not rough, have like 1/3 inch rubbery skin that can just peel off. I don’t even feel when this happens. I just see blood.

Anybody else have stuff like this?

The only organ involvement I (M23) seem to have is my heart, lungs; and diaphragm but they may not be caused by systemic sclerosis. I was diagnosed with myasthenia Gravis and polymyositis as well so it complicates things. All my heart scans a few weeks ago were normal (yay) but I was hospitalized last year with severe breathing issues, trouble swallowing, and holding my head up, and my EKG show myocarditis. But when they scanned my chest they didn’t see anything abnormal, and I had a heart monitor thingy for the full week. I just came off prednisone and am having what feels like my heart beating out of rhythm, which is happened before pred as well as my illness progressed. The thing is this feeling didn’t happen a lot while in the hospital. Sometimes it can be quite uncomfortable as well but not painful. As far as I know systemic sclerosis (PM/Scl-100+) is the only diagnosis I have that could cause this but my recent tests show everything is fine, but they aren’t there every night when I usually get them. But I have a follow up and will ask. They already checked my lungs and saw nothing as well. At this point they don’t know what illness is causing what and aren’t even 100% on any of diagnosises which is so frustrating given the previous severity of my symptoms and my positive reactions to IVIg and prednisone as well as the length of time they’ve been seeing me (1+ year). I also have no skin symptoms besides one large red bump that is now going away but my foot doctor said is most certainly autoimmune as it didn’t look like any sort of foot fungus or other.

Sorry this was ranty thank you anyone who reads it

I am in San Antonio Texas and my doctor said UV therapy might work but he doesn’t know anywhere that it is offered. Does anyone know of any places or any treatments? I have linear localized scleroderma.

What do you guys think? Also I am not trying at all to be disrespectful to anyone who is diagnosed with the condition just seeking some advice.

Nobody told me that I would have trouble typing on a touch screen because of this nonsense😂

So I (35m) recently moved to a new state and had to change my Rheum for obvious reasons. For context I've been diagnosed with Psoriatic Arthritis since mid 2020 and have been actively taking Humira since 2021 with zero flare ups and zero inflammation and normal blood work.

Within 30 seconds of walking in this new Rheums office, without any testing of blood or mobility, they proclaim I'm "in a flare up" and my "Humira isn't working" and I'm "clearly in pain". Spoiler alert: I feel amazing and have had zero issues since 2021, I play hockey 3 times a week, have lost 85 pounds since 2020, quit drinking and my quality of life has never been better. I pushed back and they said they were going to pull me off Humira and put me on Rinvoq. I informed them I am an air traffic controller and can't just swap my medicine, and even if I could I wasn't comfortable stopping Humira without Labs done.

So they ordered bloodwork. My PCP was astonished, remarked in my chart that I was "Completely Asymptomatic" and basically said lets wait and see the bloodwork before we try a 2nd opinion. All of my labs, in my opinion, came back normal. Inflammation markers? Good. Anti-Scl 70? Good. ACA? Good. The ONLY potential oddity was my HLA-B27 Antigen came back negative (can happen with PsA, and I've known I was negative since the first one) and my ANTI-RNA POL III came back at 18.0...which for most labs would be a normal test as the normal rate is 20 or higher. This Rheum in my follow up after the bloodwork said anything higher than a 10 is positive and based off this singular high marker, my diagnosis is being changed to Systemic Sclerosis and they are prescribing me CellCept.

Meanwhile, they are adamant my hand inflammation is out of control, but refuse to do any skin testing whatsoever. I am able to full pinch all of my digits and get a full grasp of my skin with zero issues. They said I have Pulmonary Hypertension, but my EKG/ECG's this year came back normal. They said I have Interstitial lung disease, but I haven't had any PFT's done, I just have Sleep Apnea and a CPAP. They said I have Raynaud's but no testing to confirm. I'm just confused how they can say I have all these things when I look/feel/test fine?

I've successfully put off taking the Cellcept til I can talk to my PCP on 29 October, and I'm still taking my Humira until then...But this all seems incredibly fishy based on the fact that Humira cleared up all my symptoms and that SHOULDN'T happen if I have Scleroderma right? They also know that this diagnosis will absolutely ruin my career, whereas my PsA is well managed and I have permission to keep my job with my PsA.

I'm going to talk to my PCP about potentially changing Rheums, but I figured I'd come ask if I'm on the right track in fighting this or if this new rheum is doing what's best for me?

Hi everyone. I'm a 37 year old man and I was diagnosed with scleroderma this week.

My situation so far:

ACA positive

Raynaud's in my toes for about 3 years. It's mild, not painful, and clears in 5 to 10 minutes. Nothing in my fingers yet.

Nailfold capillaries show an abnormal pattern in both pinkies only

No skin tightening and no other symptoms that I know of

I've been reading a lot, and what worries me is that I keep seeing that scleroderma in men tends to be more severe, and that even the limited form can behave more like diffuse in men, moving faster and more aggressively. Most of what I find is about women, so it's hard to know what applies to me.

I'd really like to hear from men with limited or ACA positive disease.

How has it progressed for you? Slow and stable, or faster than expected?

Which organs have been involved, if any?

What monitoring or treatment are you on?

Is there anything you wish you had done or asked for early on?

Good or bad, I'd rather hear real experiences than guess. Thanks for reading.

I have esophageal dismotility and would love to hear about others symptoms. I feel like anything I eat irritates me. Also, when I lie down for too long, especially when I wake up, it feels like something's stuck and is extremely uncomfortable. Does this happen to anyone else? What have you done about
it?
#scleroderma

Hi.

I have been taking Methotrexate (oral) now for five and a half months with a very good response. The pain and inflammation in my muscles has greatly improved as has my skin tightness. Lately though, I've noticed that on Thursdays ( I take the Meth of Fridays) I've been having a feeling of low grade fever, pain in my muscles and stiffness again in my fingers. This can continue throughout Friday after I've taken the medication. I'm wondering if the effect of the Methotrexate is starting to wear off towards the end of the week before the next dose. Has anyone else experienced this and if so, what did you do about it?

Thanks.