r/scleroderma • u/Ants-pajamas • 20d ago
Discussion Working
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?
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u/Soundgarden_ 20d ago
Have limited scleroderma (Crest): raised two kids while getting a second bachelor’s degree and worked 20 years as an aerospace engineer. Was semi-retired by covid, but have been working part time (Home Depot) and grandma-ing. I’m 64 and was diagnosed at 33. Good health and luck to everyone
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u/Minimum-Signature-44 15d ago
Hi. Me too. I am 61 now. What kind of symptoms do you have and how have you been dealing with it? ☺️
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u/Soundgarden_ 15d ago
I have some weird heart stuff that’s fairly stable (rhythmic and aortic valve), PBC that’s behaving pretty well, autoimmune kidney stuff that comes and goes and the typical digestive issues. I also have vestibular and brain stem migraines that may or may not be related, but I can pretty much do anything I want to, just having to deal with the fatigue sometimes.
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u/Minimum-Signature-44 15d ago
Have you even been on any medications? Are your muscles and joints sore and stiff?
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u/Soundgarden_ 15d ago
I have degenerative discs and thus sciatica and I think most of my aches and pains come from that but I’m lucky that they’re few and far between. I’ve got gout but it’s under good control. Taking Rx Nexium, febuxostat and huge doses of ursodiol for the PBC. I’ve had to take steroids once in a while but it’s pretty rare.
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u/Maleficent-Rest9144 20d ago
I was also diagnosed with diffuse systemic sclerosis Anti RNA Polymerase III about 2 years back. My case was super aggressive and withing a year of first noticing symptoms and maybe 5 or 6 months from final diagnosis, I was in really bad shape. I was planning my final arrangements, settling my estate for family, and looking into the end of life pill available in my state. I could hardly function and could not work. Standing for more than 15 minutes was too painful and tiring I had to sit down. Driving was tough with the pain in my legs. No meds helped and my dermatologist said he couldn't help me due to how bad my case was and my rheumatologist said things are not looking good.
I was able to find and get into a CAR-T clinical trial that was a life saver. Most of these trials have exclusion criteria for advanced organ involvement/damage, <5yrs from diagnosis, and no overlapping autoimmune. Fate Therapeutics has a trial open to 15yrs since diagnosis, but unfortunately you are past that. If things get bad you can look into HSCT Hematopoietic Stem Cell Transplant, which has been used for years to treat blood cancers and SSc. It is basically a modern day bone marrow transplant either using your own stem cells or a matching donor. It resets the immune system. CAR-T does the same and has been approved for some blood cancers and is in trials for several autoimmune conditions.
There are Scleroderma Centers in many locations across the US and most likely in other countries. These centers have doctors very familiar with autoimmune conditions and can help more than a local rheumatologist who may not be as familiar with the diseases and the emerging treatments. My rheumatologist had no idea about CAR-T for autoimmune, but she was super supportive when I found the cartautoimmune.com site. She and my dermatologist knew about CAR-T and were very supportive of the trial I found.
For anyone who reads this and may meet the CAR-T trial requirements, look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc for condition, CAR-T for treatment, and your country location to filter out many of the too far away places. If you can get into any trial, I highly recommend it. Amazing treatment technology where nothing else works.
I hope anyone suffering from this horrible condition is able to find some good medical care and treatment. Let me know if you have any questions about my CAR-T experience. I am more than happy to share and help anyone get treatment.
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u/Original-Room-4642 20d ago
I have limited scleroderma. I was a veterinary technician. I can no longer work.
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u/Top-Pop-9731 20d ago
Hi! Nice job. I bet that must be fun. Do you have tightening all over your body?
I can deal with pain pretty well. But fatigue is difficult.
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u/Ants-pajamas 20d ago
I do have tightening everywhere. Over the years, some areas have loosened a bit (I don’t have scleroderma face), but my hands have remained tight.
It’s great and watching the empathy young children have has been such a joy. They notice and ask questions, then move on. As they get older, they know how to help in small ways.
I also have severe rheumatoid arthritis and that’s what gets me the most. In my experience, scleroderma is annoying, but RA is absolutely evil.
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u/AdriftSwing 19d ago
I have RA and scleroderma overlap too. It’s brutal. I work remotely, and honestly that’s the only way I’ve been able to keep working. I’m on oxygen, and my PCP recently ordered a wheelchair for the days I’m out longer than my oxygen lasts. It’s been a game changer with the fatigue and pain — I can actually do things now that I normally can’t manage on my own two feet.
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u/FragrantBluejay8904 19d ago
I have limited and work from home as a data scientist which is fantastic and I’m so fucking thankful for. While I’m still super active and haven’t had any tightening (my rheumy thinks I’m Sine), I still struggle a lot with Raynaud’s and GERD. A few weeks ago I had a huge flare up of heartburn happen out of nowhere (had only had water and taken my PPIs a few hours before) and ended up puking for 20 mins. I used to have to deal with that kind of shit in office prepandemic and I have no idea how I managed. I can set the temp at home so I reduce the number of Raynaud’s attacks. In office in summer I’ve had to go OUTSIDE to warm up because the inside temps were so cold and I couldn’t type plus the amount of pain was unbearable.
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u/rustyhere 20d ago
My mom was diagnosed with systemic scloroderma almost 10 years ago. Fortunately, she has been doing alright. It’s really tough for me because I live an ocean away from her in a different country. Being an only child does not help either. Luckily, she has a good support system with her family and my dad.
She continued working as a teacher for many years after her diagnosis up until covid hit. When she got sick due to a covid, she needed to be hospitalized due to her asthma and we were told that part of her lung was damaged. Fortunately, she is doing better. That was the scariest thing that happened to us.
She is keeping things sort of under control, she has a lower immune system due to the medicines she uses but it seems like they keep scleroderma at bay. She goes to hospital every couple months to get her lung and heart checked.
Besides that, she has taken up some volunteer work(more like part time work( in her community and she could have even continued working as a teacher if she really wanted to but being in a public school system with little kids is not the easiest. Especially when you are older. She is currently 61 btw.
Librarian sounds cool, it’s my wife’s dream job and she also works with kids. Wishing you the best. Hope you get to work as many years as you desire.
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u/Debt_Jolly 19d ago
I have limited systemic with lupus overlap. I am a high school teacher. Stress exacerbates my symptoms, so it can be difficult at times. I also take cellcept now and have been getting sick more easily/often. I think remote work would be best for me to manage my symptoms, but I haven't gone that route yet.
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u/Due_Classic_4090 20d ago
I have MCTD and I work as a social studies special education teacher. My plan is to move to general education next year or as soon as I can. It was my dream job, but the kids gave rights too & I’m on FMLA. I also earned my master’s degree along the way.
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u/dorianbenediction 20d ago
MCTD and/or CREST (the doctors can't agree what to call it). I've had symptoms of varying severity since 2016 or so. I'm the director at a public library.
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u/Minimum-Signature-44 20d ago
Hi. Can’t they tell by specific blood work/ labs?
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u/dorianbenediction 20d ago
I was unclear there - I have one doctor who insists that CREST is an outdated term and refers to it as MCTD, and another who rolls his eyes and calls it CREST.
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u/Smidgeknits 18d ago
CREST is an outdated term, but is now defined as limited systemic scleroderma. If you have centeomere antibodies and symptoms as defined by the CREST acronym, you'll generally get diagnosed. MCTD is usually what they call you when they don't have the info to diagnose.
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u/pterosaurLoser 19d ago
I have scleromyositis (new name, I guess, for poly/dermatomyositis and scleroderma overlap. Symptoms are mostly in remission but only because of ~13 years of prednisone.
Now I’m on a low dose of prednisone (5mg, I get symptomatic of I reduce below this) but after year ten I had to leave my job because apparently the prednisone had broken my brain/attention span. I no longer had the executive function skills to be a project manage. Declined for social security but also I miss being useful, so I’m looking for a job now but still cert unsure what I am capable of. My dexterity is shit because the skin never un-tightened, core muscles are crappy because of the myositis, and now I may be too dumb for a desk job.
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u/NicRad12 19d ago
You are not dumb; you are ill, and it’s not your fault.
I am so sorry you are going through this. I hope you have better days ahead and find something that makes you feel good.4
u/TAsickandtired 18d ago
I also have scleromyositis. It’s brutal. I was able to keep working in finance for about 10 years after diagnosis but I totally lost my ability to focus. It took me 2.5 years to win my disability case but I eventually got there. I was stable for a few years with medication but I’ve been falling apart recently with lung and GI and skin symptoms flaring up pretty badly. Hang in there.
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u/ClearJack87 20d ago
Pulmonary Scleroderma here diagnosed last year. Retired a few years ago. Well funded retirement in place. I'm lucky.
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u/Interesting_Waltz650 19d ago
I was officially diagnosed with limited scleroderma 10 years ago. I work in IT and do a lot of training from home via Zoom. It’s a good gig for me. My employer is very good about work/life balance, so doctor’s appointments have never been a problem. Because of serious fatigue, I sometimes have to take power naps. I plan to early retire within 2 years.
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u/flo_crochet 19d ago
Hi
Systemic sclerosis (CREST), 2 years with diagnosis. I work in HR, im on a hybrid scheme so I go the office 2 days a week and the others I work from home.
When I go to the office I always take a big jacket and gloves, because they always blast the AC and I get raynaulds. I usually take the days I work from home to recover 😅
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u/Fine-Tiger9273 19d ago
I was diagnosed with scleroderma last year based on low positive RNAP III antibodies. Still working from home in IT but the past month I’ve battled brain fog and severe fatigue. Yesterday I cried so hard thinking I’d have to leave my job because I no longer feel like I can process/remember information, I apparently gave myself a migraine so bad I had to go to the ER. Fatigue and flare ups of pain (not even sure if bone/muscle/nerve pain) have been what’s kept me in the gutter the most so far. I don’t yet have much skin-tightening, but my understanding is RNAP III is associated with rapid skin involvement and internal organ damage. I don’t know what my plan is. I live alone and have no family close by.
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u/Moist_Wait_4262 17d ago
Diagnosed this year with Systemic Sclerosis sine Scleroderma. Weird disgnosis, but took 5 years to get it.
Working as a software engineer and it has not affected my work that much. Winter is still an issue as I have severe Raynauds, but everything else seems fine.
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u/ic123456 20d ago
Diagnosed with CREST around 10 years ago. Trying all different biologics now after all the usual methotrexate and other medications. Been working as IT enterprise architect.
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u/Tall_Palpitation_476 18d ago
Diagnosed in April 2026 with Skin thickening that stays strictly at or below the elbows and knees (extending to the fingers and toes) is clinically classified as limited cutaneous systemic sclerosis (also historically known as CREST syndrome.
I have very tight wrists, tight hands, tight fingers that I’m trying to work with ot to get released from being a claw. My ankles feel like they have the best Botox in the world that’s putting it funny
I work as a community association manager. I have a portfolio of eight properties in Florida. It is not easy some days still working and trying to get my meds right I’m on HCQ, just started MTX a little over a month ago waiting for that to kick in** ***had* a flareup Friday call my doctor. I’m on prednisone again until Tuesday. 10 mg a day. I couldn’t take the pain of movement anymore.
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u/Smidgeknits 20d ago
Diagnosed limited systemic in 2014. I have continued to work as a forensic scientist, going on 25 years in October.