Lung involvement

I am curious if it is possible to have lung involvement as the first symptom of Scleroderma? I had a severe case of pneumonia and they did x rays and a ct scan, the lung dr said my scan looked suspicious. I go for a follow up August 18th to find out more. I told them in the E.R that I tested positive for Scleroderma but the ER dr said I had no visual signs of it. Is it possible to have lung involvement first?? Help me please?

6 Replies

  • I believe there's a rare form of scleroderma (which is rare to start with!) with no skin involvement just organs - have a read on the scleroderma society's website for the name :) x

  • Yes I would say that lungs could be first involved. I do know somebody who has PAH as a result of lung involvement and didn't know she had Scleroderma at all until her heart and lungs were well affected. I have Systemic Sclerosis with almost no skin involvement but my alimentary canal is affected from throat to anus. I used to have raynaud's, have had some tiny calcinosis lumps and telangiectasia but that is all on the outside. I am having serious problems with my stomach and am incontinent but for me no heart or lung involvement. Sclero without skin involvement is called Scleroderma Sine Scleroderma.

  • Also have scleraderma long term and awaiting angiogram next week for pulmonary hypotension of the lung hope you get on alright please let me know how you get on

  • To do an ANA test for Scleroderma,there must be something going on. Best of luck to you!!

  • Mine started with scarring of the lungs.i had had Reynauds for years and my hands were knobbly but I thought that was age. I now have most of the classic signs of systemic sclerosis. We are all individuals and so are our body's reactions. Good luck and be positive.

  • Hi

    I have scleroderma which was also diagnosed as a result of pneumonia with empyema. I have had raynauds for years. I had a very good doctor who investigated why I got pneumonia twice. Since then I have lots of the symptoms

    I don't know if I would have had scleroderma if I didn't get pneumonia

    Keep well . I have pain still but no fibrosis at the moment.


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