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noahs (@noahs)

Autoimmune attacking my lungs

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

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@suziropiequet

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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Replies to "Hi John, thanks for your welcome. OK..the Prednisone journey...long story short, had a very sudden, severe..."

Hi Suzie . Not that I’m happy you are sick, but I find comfort knowing someone in this journey. My highest dosage long term use of Prednisone is 20mg. They tapered it to 10 mg and I was on that dosage for several months. Then since I was good my rheumatologist and pulmonologist wanted to slowly taper me to 5 mg this feb. But I got an infection
That my pulmonologist was treating as a lung infection with oral antibiotics. For 10 days, stop 7 days, then again 18 days. Then my pulmonologist concluded that it’s my autoimmune hitting back with low grade fever, chills, achy muscles, headache. And brought back my prednisone to 10 mg. The low grade fever stopped but the bad fatigue and depression and headache is strong. I see my rheumatologist tomorrow Monday in Manila, Philippines. I have not been classified as Sjögren but the symptoms of dry eyes and dry mouth is already present and one of the things I will tell my rheumatogist. I am on two cellcept with plans to increase to four cellcept a day. My immune system is attacking my lungs and may be the reason for
My interstitial pneumonitis scarring that was discovered in Feb 2014. My lung condition worsened every year and caused
me several hospitalizations and procedures. Finally after a 17 day confinement on two strong antibiotics by ivy
That did not solve my infection, my pulmonologist stumbled on checking me on autoimmune and had my blood tested. All test results showed autoimmune . So my journey has really started to worsen very badly on Jan 2014 when I was
Hospitalized for pneumonia after
Getting a pneumonia for life vaccine. (I changed pulmonologist after this bec other elderly patients died
Bec of this strong
Vaccine .) Anyway Mayo Connect has been a great help to me .
I have googled
Everything about my
Lung
Disease but
Mayo Connect gives me a view from a personal oatient’s viewpoint. Hope to hear from
You in this group.

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