Autoimmune attacking my lungs
Hi. I’m new in this group. I was diagnosed in June 2018 of autoimmune disease attacking my lungs. This finally gave the answer to my long journey with my pulmonologist on why I had very frequent and strong lung infections. I also was diagnosed with interstitial pneumonitis in 2014. I was given prednisone 20mg
In June and now am tapered off to 5 mg. I I am also on Cellcept – two tablets twice a day. Unfortunately though my lung infections is one after the other and I am
On strong oral antibiotics every time … sometime for 20 days of two different antibiotics. These infections are causing me great physical and psychological pain. I am interested to meet other patients with the same autoimmune disease as I have. T
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Hi @noahs, welcome to Connect. I'm sorry you are having to deal with so much physical and psychological pain. I know it is more difficult when you feel you are alone. I did a search and found a few members discussing interstitial pneumonitis in the Lung Health group. @ppeschke, @mec1944, and @merpreb have discussed interstitial pneumonitis in posts and may have some suggestions for you.
Has your doctor been able to offer any treatment suggestions for you?
Hi john … thank you for welcoming me to the Mayo support group. I just came from my pulmonologist . My symptoms and complaints seem to stem from the tapering off of my prednisone. Last Feb 18, when I was well, my autoimmune doctor decided we start tapering my prednisone from 10 mg to 7.5 mg for two weeks . Then to 5 mg which is my dosage now. And yes my health problems started about then. So my pulmonologist brought me back to 10 mg. I did not think of this but when my pulmonologist told me this today I was not surprised since I read in the varied groups of Mayo Connect what other patients have experience when prednisone is tapered off. And each patient has his/her own “style” of tapering off that suits one’s body. I’m glad I joined this group . It helped me understand my illness better …even if I have been googling it a lot. I found very helpful the link on “five things I wished I knew before I had chronic illness “ . I identified with it a lot and did not feel alone in my journey
And yes John … I also follow lung disease, bronchiectasis, and interstitial pneumonitis … which I have
Hi John … I was reading the Prednisone discussion. What is PMR?
@noahs PMR is polymyalgia rheumatica which my rheumatologist described to me in layman's terms as arthritis all over the body.
Hi Everyone! My 1st post on Mayo. I was finally diagnosed with Interstitial Lung Disease 2/19, and Sjogren's Syndrome 3/5/19, an autoimmune disorder. The symptom I noticed first was bouts of achy muscles over the years, was diagnosed with "fibromyalgia" in 2005, and now Sjogren's started in on my tear ducts and salivary glands. "Dry eyes, dry mouth." I see an eye Dr next week who will test my tear production, and then a drop of dye to show any "dry eye" damage. Vision is also blurry. Sjogren's has scarred my lungs. Been a lung patient since 2003, Emphysema. Started taking generic Cellcept last week, which is supposed to calm down the inflammation in my lungs. I've also been on Prednisone since mid-Sept, 40 mg, tried tapering once, trying again was @ 25, descended into Prednisone Withdrawal Hell, returned to 30. MUCH better! That's another page though! (and I have a great Prednisone Meltdown Story to share there! Talk about rude behavior!)
Hi Noah, I have the same issues as you. I just posted an introductory message here that will tell a bit about my pulmonary journey. Stay strong! Suzi
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
> Groups > Digestive Health > Prednisone
Are you trying to taper off of prednisone?
@suziropiequet Welcome as John said I share dry eyes,dry mouth fibromyalgia I opt for naturel products theres to many side effects from Dr,s For years Ive been taking Fibro Malic more magnesium in it for fibro ,Eye Dr has me on drops akso glucoma dropd also I have Macular Degeneration I have found Golden Milk helps with inflamation
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.