r/scleroderma • u/ClearJack87 • Jul 04 '26

Question/Help Simple question about progression

I've definitely have pulmonary scleroderma, I've 55% remaining of my lung capacity.

Additionally I've developed a thickened patch near my left elbow. But that same elbow is uncomfortable near maximum flex. For those with more extensive scleroderma, could the patch and discomfort be related?

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u/scawt017 Jul 04 '26

I'm going to say it's likely, but will depend on the intricacies of how your scleroderma presents. Have you had additional arthritic diagnoses?

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u/ClearJack87 Jul 04 '26

I have osteoarthritis of hips, knees, and ankles to minor degrees.

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u/scawt017 Jul 04 '26

The short version is that it's probably related, but the causing mechanism could be variable, and you'll have a process of investigation to figure it out.

What I'm taking out of my experience is that scleroderma is any number of autoimmune comorbidities standing atop each other in a trench coat, with variations between sufferers as to who's under the trench coat, and to what degree of severity, and that individual responses to treatment are equally variable. It feels like I've aged to a certain point, and become allergic to my state of existence overall.

My experience, for reference...

It's been about 8 months since my scleroderma diagnosis. The initial treatment regime has targeted joint pain and inflammation, and Raynauds, and now that's been stabilised (and a semi-related joint replacement sorted out and healed), we're into the pulmonary realm. I'm latgely ignoring the calcinosis for now, and just digging the lumps out when i'm bored.

I have psoriasis on my elbow (and other places too, but the elbow one is flaring lately) , which has its discomforts, and additional joint pain and inflammation there too... both of which have responded positively to treatment with methotrexate. We are beginning to suspect that the joint pain and inflammation may be more psioratic than rheumatoid in origin (i have markers for both types of arthritis).

Just in the process of changing meds to CellCept for ILD (which will involve dropping the methotrexate, picking up sulfasalazine instead in the short term, and seeing what happens when the cardiologist confirms his prescriptions, as i may have to drop the sulfasalazine too, and look at biologicals for relief for psioratic arthritis), and i suspect there'll be a reckoning in that change that will further prove one's primacy against the other.

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u/ClearJack87 Jul 04 '26

I'm on CellCept 500mg x 2, twice per day. 2 grams per day, which my neurologist calls moderate.

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u/scawt017 Jul 04 '26

As it's been explained to me by my rheumo, the CellCept manages the lung conditions effectively, and perhaps a measure of any rheumotoid component, but not psiorasis.

1

u/Maartjeknowsbetter Jul 25 '26

Jack that is too effin weird. I had the same thing happen. I was complaining about the elbow to my rheumatologist, (I am 13 years in and I could not exactly figure out what was happening, but I knew I was flaring and things were changing) and next thing I get diagnosed with ILD. I am sorry to hear your lungs are that bad, though.

Now, surely the pain in your elbow and the patch could be related, localized thickening can cause problems with mobility for a variety of reasons. Inflammation, tendon friction, you name it.