Lung involvement : I am curious if it... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Lung involvement

granny0608 profile image
6 Replies

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?

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granny0608 profile image
granny0608
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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

judyt profile image
judyt

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.

tillyhamishnobby profile image
tillyhamishnobby

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

lifeforce profile image
lifeforce

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

domayh profile image
domayh

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.

Hollyhobbie profile image
Hollyhobbie

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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