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Scleroderma (Systemic Sclerosis): Anyone else?

Posted by kimberlyf @kimberlyf, Aug 18, 2024

Struggling with multiple issues

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Alta Net | @altabiznet | Jun 5 7:21pm
In reply to @kimberlyf "I was diagnosed with Systemic Sclerosis in June of 2023. At the time I lived in..." + (show)
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I was diagnosed with Systemic Sclerosis in June of 2023. At the time I lived in TN and the rheumatologist I was referred to wasn’t very knowledgeable in treating my condition. They found that I had esophageal dysfunction and pulmonary fibrosis as well as microstomia and other facial changes. In March of this year I moved to Ga. Since then my condition has worsened. My ILD has progressed, I have severe GI problems now and I’ve lost the padding in the bottom of my feet. Walking is almost impossible. I no longer recognize myself due to the facial changes.

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@kimberlyf

What treatments are you taking? From approved drugs, you can have methotrexate injection plus oral Mycophenolate Mofetil. Both are low-cost drugs covered by insurance. For ILD, you can have Actemra injections, more expensive, but also covered by insurance.

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Alta Net | @altabiznet | Jun 5 7:28pm
In reply to @robinlundblade "I was Diagnosed back in February with scleroderma, Sjogrens and ILD. Positive ANA positive Scl 70..." + (show)
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I was Diagnosed back in February with scleroderma, Sjogrens and ILD. Positive ANA positive Scl 70
They started me on Prednisone, Cellcept and Retuxamab infusion. It was May I did first round of infusion. My CT last week showed mild progression. I don’t know what to think. Should I be seeing something different on the scans.

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@robinlundblade

Sorry to hear about your disease progression. It has been only 3 months since your first treatment. It may take more time and more treatments to see positive results.

Your post is going back to August of 2024. How have you been since then? Did Rituximab plus Cellcept work better for you over time?

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itat | @itat | Jun 6 10:18am

JASCAYD is a new antifibrotic medication that is apparently easier to tolerate than existing ones. The doctor wants to put me on this treatment, but the price is truly inaccessible: $16,000 a month. Medicare Part D added it to its list of covered medications in February of this year, but I haven't found insurance that will cover it.

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