Does anyone have both localized and systemic scleroderma?

Anyone else have both sides of scleroderma?

4 years ago I was diagnosed with systemic scleroderma (both limited and diffuse). I had Raynauds and pulmonary fibrosis. With a 6 month treatment of cyclophosphamide, the pulmonary fibrosis went away, but I started developing other CREST symptoms. Within the past 5 months, I started developing morphea (skin discoloration and tightening) on my arms and neck, which are symptoms of localized scleroderma.

My rheumatologist had not heard of a case where a patient has both sides. Am I all alone, or are there others out there? Just curious.

4 Replies

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  • I have not heard of anyone having both. I had read in the RSA HOT NEWS that they were considered as different. I suggest you contact the Raynaud's and Scleroderma Association.

  • Hi zenabb you are not alone I have both systemic scleroderma which involved the internal organs as well as the skin, Raynauds and interstitial lung disease. I am currently having cyclophosphamide for six months to see if the lung situation could be improved PUVA light therapy for the skin and illoprost for the Raynauds. So from my experience you could have both. How did you cyclophosphamide treatment go and was is successful.

  • Sorry the answer above was meant for Flickchick777

  • queen, I did a 6 month treatment of cyclophosphamide, once a month. It wasn't great, but it wasn't horrible. I was nauseous and felt like I was car sick through the treatments, but I never threw up. But then again, I don't generally throw up. I felt weak and tired for about a week, but then I would be fine. So, compared to other chemotherapy treatments, this really wasn't too bad. It did heal my lungs though. I have no scare tissue and no traces of pulmonary fibrosis. =) So that is cool. To me it was worth it. I would bring my laptop and watch movies all day while they did the IV treatment. =)

    Hang in there, and glad to know I am not alone. =)

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