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Dec 19, 2017 · IPF How To Cope with Sick Feelings in Lung Health

Yes I’m achy and have pain in all my joints everyday since being diagnosed in May 2015 . I get no help from the doctors and I have read on many articles that muscle and joint pain is caused by IPF which to me and I’m not a doctor if your oxygen goes low like mine does up and down all day because of no activity to move around – your body supports your organs with oxygen first then your limbs I have said this non stop for two years I get no help and am in pain every day I’ve read many articles about lung function etc and they say exactly what I’ve been telling the doctors so yes you doing get muscle and joint pain they just don’t know anything I’ve come to believe about IPF period so I guess we just suffer the pain fatigue and pain to breathe until we die ? I’m disgusted needless to say I’ve just about decided to not even go to the doctor it’s so frustrating and they have not helped me at all the prednisone, cellcept, Imuran made me sick and did nothing but cause cataracts, bone loss, pre diabetes or I pray for all of us for a doctor to listen . Good luck

Oct 15, 2017 · Pulmonary Fibrosis* in Lung Health

Thank you I wish you well also

Oct 14, 2017 · Pulmonary Fibrosis* in Lung Health

I was diagnosed moderate last October at Mayo referred me to lung transplant center I’ve decided not to do that mentally I don’t think I can take the wait to see if I get an organ match on time and the wondering after if I’ll reject it I’m 54 I have had a hard life or I feel tired of fighting so I’ve decided against a transplant it’s been a year and a half since respiratory failure and the PF diagnosis with organizing pneumonia my lungs have gotten a bit more scarring and I feel crappy most of the time fighting lung infections I’m just living day by day to the fullest and looking into esbriet as a possible drug to try

Oct 9, 2017 · Pulmonary Fibrosis* in Lung Health

Sorry I’ve gotten worse fibrosis in the last year and a half twice

Sep 27, 2017 · Pulmonary Fibrosis* in Lung Health

Amen !

Sep 21, 2017 · Pulmonary Fibrosis* in Lung Health

I can’t take really bitter cold air below zero in Minnesota at times and really hot humid weather I have trouble breathing pretty bad need to wear oxygen pac on 4 and 5 pulse other I dip in the 70s at my worst this past winter I most definitely would wear a mask outside I tried cellcept made my kidneys drop to 50 percent working in 3 weeks won’t take it again before may 2016 I never had any lung issues kidney heart liver etc so I refuse to take a med that damages and has that affect on another organ also tried imuran per the Mayo Clinic that made me violently ill throwing up couldn’t keep very little liquid and no food finally went to the er gave me shots to stop throwing and pills for home 3 bags of fluids later stopped meds refuse that one again too I’m taking the natural wait and see approach I’ve been healthy my whole life I’ve got a little more fibrosis this past year and I’m able to walk very short distance no oxygen walking slow that’s all I can do with my lungs the mayo graded me as moderate pic with organizing pneumonia

Sep 16, 2017 · IPF and shingles in Lung Health

I had gotten a small area like two “sores ” on my face of shingles about a month ago that’s my only experience hopefully that will be it

Sep 16, 2017 · Pulmonary Fibrosis* in Lung Health

No meds now my dr had put me on cellcept which was shutting down my kidneys within 3 weeks and imuran which made me violently ill throwing up and diarrhea for 6 days so bad I got dehydrated and went to the emergency room for meds to stop throwing up and 3 bags of fluids my doc this past week tried to get me to try them again I refused they both MAYBE will stop progression of fibrosis for a maybe in not willing to take either strong drug with huge side effects I’ve read a lot about esbret on this thread if I happen to get worse I will ask about this drug although I read also with insurance it’s 3000 a month