Diffuse Scleroderma Remission?

Curious if any with internal organ involvement are in remission from Scleroderma? if so, please tell me how old you were when you were diagnosed? how did you get diagnosed? what treatments were you on? how did you feel on these treatments? and how are you doing today?

I am in the process of being diagnosed. Have heart problems, a little raynauds, positive ANA nucleolar pattern, some digestive troubles. Digestive problems are non existent, raynauds not bad, two years ago suffered from arrhythmia of which I was implanted with an ICD and placed on Sotalol. Undiagnosed until now. Been running a lot so docs do not believe it has entered my lungs. Docs are considering Cellcept or Methotrexate (sp?). Would love some positive stories! I am 40 and being blindsided by all these health issues. Crazy!

3 Replies

  • Hi. I have Systemic Sclerosis (it was previously call Diffuse Scleroderma) with some internal organ involvement. I was diagnosed in 2005. I am not really keen on disclosing my age when diagnosed. Let's just say middle 30's. I was working in the Rhuematology department doing clerical work when diagnosed. One of the consultants noticed my Raynaulds as I arrived for work one morning and also the curvature of the fingers of my left hand. I don't have lung involvement, but I am on Gabapentin for a hole in my Esophagus, caused by the Scleroderma. Also the skin on one side of my heart has thickened which led to a heart attack about 3 years ago

    I was registered at the Royal Free Hospital in London. They have a dedicated Scleroderma unit there. I was seen by the amazing Proffesser Denton who realised that my Scleroderma was a very aggressive one as my skin was hardening rapidly. As I live in Derby, I could not be admitted to the Royal Free, so I was given Nexium, Mycofenilate (sp)? and Prednisalone.

    I have been in remission for a couple of years, but in the last week or two it has started again with the skin hardening on my arms and across my chest. Am waiting for a Rhuematology appt.

    Cellcept is a familiar name and I can't remember if it goes by another name, but I seem to remember being on that at some point.....

  • Gazea, thank you for your reply. I am sorry you are having a flare up, but I hope that you will be ok. Can I ask what heart medication are you on, if any?

  • I'm not on any Cardiac medication. I have Omeprazole 20 mg x2 everyday. Gabapentin 300mg X 3 everyday. Folic Acid and Vit b. Hope that helps.

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