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Rheumatoid Lung
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jackann posted:
Hello, I am looking for someone who is in the same boat I am in I need some answers. I have a RA for over 15 yrs. now. My doc says my rheumatoid factor should be less than 14, mine is 248. I have tried all the meds, remicade, humira, arava, etc. My problem now is the nodules that I have on my elbows, fingers etc, have now gone to my lungs. My latest cat scan show ILD interstitial lung disease. I have severe shortness of breath, a cough, fatigue, headaches and muscle weakness. My doc put me on 60mg prednisone, however the side effects were to much and I am now only on 10mgs. Has any one had this problem and if so are taking something else. Lung doc wants to put me on Imuran but RA doc says no. I have my next Cat scan in a few days and depending on results I will have to have an open lung biopsy. Any help greatly appreciated
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turk1962 responded:
Hello, I've had RA since 1999 im 52 male and while being treated for my RA with the IV Infusion of Remacaide I developed a rare lung fungus (which is one of the side effects on the warning description of several RA meds)A doctor from the CDC took over my case and treated me , I cant remember what I was on but I was on it for 2 years , and they took me off everything that I was on treating my RA said I could no longer be on anything that lowered my immune system or the lung fungus or even a different type of fungus could be fatal. So now all I can do is deal with my pain through a pain management doctor , who really only has a limited amount of experience with RA which kind of piss me off cause they don't really deal with the indivdules they kind of just throw a blanket over all of us and treat us that way. so I learned to be very forward with them and let them know I probley know more than them when it come to dealing with pain


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