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noahs (@noahs)

Autoimmune attacking my lungs

Autoimmune Diseases | Last Active: Apr 1, 2019 | Replies (28)

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@johnbishop

Hello @suziropiequet, welcome to Connect. Thank you for posting your symptoms. I see you have met @noahs who shares similar symptoms and diagnosis. It's good to know you are not alone. Hoping others will join your discussion and be able to provide more information and suggestions. There are a couple of discussions that may be helpful here:

> Groups > Lung Health > Severe COPD and Interstitial Lung Disease
https://connect.mayoclinic.org/discussion/interstitial-lung-disease-severe-copd/

> Groups > Digestive Health > Prednisone
https://connect.mayoclinic.org/discussion/prednisone/

Are you trying to taper off of prednisone?

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Replies to "Hello @suziropiequet, welcome to Connect. Thank you for posting your symptoms. I see you have met..."

Hi John, thanks for your welcome. OK..the Prednisone journey…long story short, had a very sudden, severe exacerbation start on 9/11/18. Needed 4-5 liters O2 as opposed to being off it most of the day, wear at night. My Pulm had me get a CT scan, and started me on 40 mg Prednisone. Since my Pulm "didn't know what was wrong with me" last Sept, he just had me stay on Prednisone and hope this thing went away or something. We tried tapering off but when it got below 20 mg/day…YUCK! Sore muscles etc. Was in hospital 6 days Jan + 10 days Feb. Started tapering after hospital, 5 mg/week, was down to 25 mg/day…the past 4-5 days were just awful! Sore muscles, skeletal, connecting tissues, etc. all going nuts. Finally I got my Pulm to take me back to 30 mg as I was feeling so rotten. He said we'll try a slower taper when I'm "feeling better." Last fall and winter are all a blur. Been on Prednisone for 6 months now. A specialist at Loyola Medical in Chicago was able to diagnose me in about 15 minutes, Sjogren's Syndrome. Taking generic Cellcept now. I see the specialist and a Rheumatologist next month.

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