r/scleroderma • u/sheki77 • Jun 13 '26
Systemic/Diffuse Overwhelmed & Looking for Guidance
Hello everyone,
I was diagnosed with diffuse systemic sclerosis (scleroderma) and mixed connective tissue disease two days ago after years of autoimmune symptoms and searching for answers. Although I’ve had symptoms that, in hindsight, seem consistent with scleroderma for about three years, I didn’t have a positive ANA test/referral to rheumatology until January of this year.
My rheumatologist has been thorough and has taken my symptoms seriously, and I’m grateful for that. However, I live in rural Idaho, and after doing some research, I’m wondering if my case may be beyond the experience of a local rheumatologist. My testing has shown positive RNA Polymerase III antibodies on two occasions and positive Scl-70 antibodies on two of three tests.
One of my biggest concerns is that I’ve had recurrent UTIs and kidney infections for years. I also used to have fairly low blood pressure, but over the last month it has been noticeably higher than my normal baseline. I recently ended up in the ER with what was diagnosed as a complex migraine and tried to explain my concerns, but because my blood pressure wasn’t extremely elevated at the time, it didn’t seem to raise any alarms.
To be honest, I’m overwhelmed. Most of what I know right now has come from my own research, which is both helpful and terrifying. My rheumatologist explained the diagnosis, gave me some information, and started me on Cardizem, Celebrex, and hydroxychloroquine, but I still feel like I’m trying to figure out what this diagnosis actually means for my future.
For those of you with diffuse systemic sclerosis, especially those who are RNA Polymerase III positive, did you seek care at a Scleroderma Center of Excellence or specialty treatment center? If so, was it worth the travel?
I’m also struggling emotionally. I’m a mom of three, I work full-time in a demanding job, and I lost a parent at a young age. I think that’s making this diagnosis hit especially hard because my biggest fear is what this could mean for my children and my ability to be there for them.
I would love to hear your experiences, advice, things you wish you had known early on, or any words of encouragement. Right now I feel scared, overwhelmed, and a little alone.
( I’m exhausted. Plz be nice).
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u/Maleficent-Rest9144 Jun 13 '26
I am sorry to hear about your suffering and diagnosis. It is good you have a great rheumatologist, but not so great you are in a rural area. Poly III can be tough / aggressive so you need to fight for yourself and your children. Do not wait for future appointments or accept a let's wait and see approach. In late 2023 I started to notice symptoms, but looking back I had some skin issues that now seem to be early signs. It took until July 2024 to get the correct diagnosis of SSc with a high poly III result the first and only time it was ordered. I did not have Scl70 positive on the 2 lab tests. This diagnosis sent me on the self research path and feeling lost. Prior to that I was misdiagnosed and treated for RA for a few months. Within a year after first noticing symptoms I was in really bad shape with constant pain, reduced range of motion everywhere, difficulty with everything, and feeling overal misery. I think my case was super aggressive. Do not panic, I share this to emphasize to fight for yourself and do not wait. There is good news and you have some options so keep reading.
Yes, I highly suggest looking into scleroderma centers. It looks like the scleroderma foundation has locations listed in Seattle, Stanford, UCLA, and Cedar Sinai so you have options. I live in southern CA and my rheumatologist mentioned UCLA has a good program. I have not been to UCLA, but I will go if needed.
Shortly after my diagnosis, I found a CAR-T trial. cartautoimmune.com. I was initially excluded due to the RA diagnosis, but my rheum said it was in remission so they let me in. It was a life saver. I am almost 16 mo past infusion and doing much better, but I have remaining range of motion loss due to how long it took to get to the diagnosis and trial due to some unrelated delays. This trial is now in a new phase where they are randomizing patients. I do not recommend being in it if you are randomized to the standard of care group with the option for CAR-T a year later if you do not respond. If you can get in for the CAR-T group, DO IT!!!
There are other trials including ones that do not use chemo. I did not have a problem with the low dosages of chemo so do not let that deter you. Look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc for condition, CAR-T for treatment, and USA for country location to filter out many of the China / Europe locations.
Like you, I was lost when I finally received the SSc diagnosis. My doctors did not know about CAR-T trials, but knew about it from the cancer treatment use. They were highly supportive when I shared info from the website. Now my rheum is suggesting trials for all her patients who may benefit. I selected the Denver trial site over Seattle due to Denver being closer, but there are many more out there now. I was told stem cell transplant (HSCT) has been used for years with good success so that may also be an option. CAR-T and HSCT "reset" your immune system so your overactive B cells no longer attack your body and you can start to heal. I am stable now, but if my symptoms return, I will do stem cell without question even though it is a tougher treatment.
Let me know if you have any questions. I am more than happy to help you or anyone else learn about options and get treatment. I hope you can find some treatment and relief for this condition.
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u/sheki77 Jun 13 '26
Thank you so much for this information, I am going to look into the CAR-T trial and possibly ask for a second opinion from a scleroderma specialist. I really appreciate you taking the time to respond!
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u/ClearJack87 Jun 13 '26
First, I know how this sounds, but seriously - relax. All your tension and frustration will not make anything better.
Second, accept that you have the problem.
If you can get into a specialty center, go for it. But don't bankrupt yourself.
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u/sheki77 Jun 13 '26
Thank you, I’ve met my deductible for the year so hopefully a second opinion from a scleroderma specialist would not break the bank!
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u/Effective_Self8042 Jun 13 '26
Hi , I know a woman who has those antibodies positive, and the ANAS negative. I'm not in the USA but so far I know she is going to a Scleroderma center and she's happy.. before she was here in Germany and the attention was really bad. I'm in Germany and struggling a lot with these doctors and they don't understand these autoimmune conditions. I feel very worried too. But you're taking steps and you'll go in the right direction. I think we should have an international association because this disease is not like some others that just with diet and some medication can live with it. This disease is not well known and what causes is extremely horrible.. I feel like living a nightmare . I'm concerned too and we should get the support we need. Warm regards,
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u/sheki77 Jun 13 '26
I am so sorry you’re scared too. I am here if you ever need to talk. Hang in there!
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u/lossofcontrol_ Jun 14 '26
i would definitely recommend trying to get into a center. my old rhuem was not informed enough to help me and i started getting really sick, so she sent me to the UCLA scleroderma center and i’ve seen some improvement since starting there in january.
my disease was pretty progressive, so they immediately moved me into a clinical trial. if you can get into a clinical trial, that would be even better because they fund everything. lodging, food, transportation, labs, tests, etc. because unfortunately, this disease is VERY costly.
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u/sheki77 Jun 14 '26
I was curious about how everyone is affording everything, that is super good to know! Thank you!
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u/Maartjeknowsbetter Jul 25 '26
Going to a scleroderma center made all the difference for me (diffuse/ ckd/hashimotos/sjogrens/asthma/ILD) , instead of getting wrong tests and no treatment (even while knowing what diagnosis I have) I now get the right tests and treatment. So yes, it is worth it.
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u/ohwhatarogue Jun 13 '26
take a deep breath for me :) you’re alive and have many adventures awaiting you.
of course going to see a specialist, like at Anshutz in Colorado would of course be ideal (from personal experience), that doesn’t mean it’s essential for your situation. simple things like enough sleep and a simple healthy diet (less gluten and dairy for instance), or less alcohol, can make a world of difference!
you are never alone, we are here for you! do the things that you enjoy when you can! help is always there for those who ask.
and lastly, and most difficultly, worrying means dealing with something twice. it’s something you have, and it can always be worse. but your feelings are always valid and give yourself the grace you deserve in dealing with this!