I had a heart attack a year last November. I was diagnosed with Sarcoidosis last July. I have just seen my doctor for a routine visit about my heart but on the computor screen there was the results of a CT scan I had three weeks ago. It said I had fibrosis in my upper lobes. I asked him about this and he said said Iwould have to speak to my chest doctor about it. I am worried now that I have pulmonary fibrosis and not sarcoidosis. I am on Prednisolone (40mg) per day but am still breathless and on oxygen.
I know pred isno real help for fibrosis. Does anyone have any knowledge of upper lobe fibrosis?
If you google 'upper lobe fibrosis' you will find there are thousands of articles on it. Incidentally, Sarcoidosis is one of the many conditions that cause fibrosis, so your 'chest doctor' was almost certainly correct in his initial diagnosis. Even COPD will cause a degree of fibrosis in the airways - remember 'fibrosis' is tissue damage caused by scarring. What you need to know therefore is whether your degree of fibrosis is to be expected or if it gives rise to any other concerns. I know there are quite a few Sarcoids folk on this site so perhaps they will be able to advise you on whether they are taking Pred, where or how widespread their fibrosis is etc. Of course the one thing you must do is raise your queries and get explanations from your specialist or your GP.
• in reply to
Hi, thanks, I will certainly ask my specialist. I am waiting for an apt to come through.
Hi Freckboy
I have sarcoidosis which has caused upper lobe fibrosis. The Pred I take is to reduce the sarc and possibility of the Sarc and further damage. However I'm coming off the Pred (remaining on immunosuppressants) as they think the sarc has burned itself out. Unfortunately it's caused the fibrosis. This caused me all those things you describe re shortness of breath etc. definitely look to a referral if your doc isn't going to do this automatically.
Good luck
Marie
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Hi Marie, my doctor last time said I would be on pred for 12 to 18 months and there was no need at this stage to put me on immmunosuppressants. I waiting for an appt to come through so will be asking a few questions about this when i see him. Thanks for your info.
Pete has been on pred for 21 years and has had sarcoidosis for nearly 22 years. He only has copd because of the scarring on the lungs and possibly elsewhere too. Sarc can burn itself out but Pete's caused him lots of damage before doing that. Do contact your doctor Freckboy and get the answers you need. Good luck and have a good Christmas. xxxx
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