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Interstitial Lung Disease and Autoimmune Diseases

Posted by spiritnsoul @spiritnsoul, Jul 18, 2021

Hi, im trying to connect with other people dealing with Interstitial Lung Disease, and Rheumatoid arthritis auto immune diseases

Interested in more discussions like this? Go to the Lung Health Support Group.

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bubbiejanet | @bubbiejanet | Aug 9 1:00pm

I have seen Rheumatologist from the start of PMR and for being on Pred for 3 years. Just off Pred in March and all these symptoms came back after it was dc’d. Not happy about going on Pred and then stronger med. Will try and get 2nd opinion this week. But

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bubbiejanet | @bubbiejanet | Aug 9 5:55pm
In reply to @maryecox "I was diagnosed with ILD in September 2020 but have never felt much discomfort. I initially..." + (show)
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I was diagnosed with ILD in September 2020 but have never felt much discomfort. I initially began with steroids but am now taking Cellcept, a steroid reducing drug. I exercise every day at the gym because my pulmonologist said “Walking is super important.” I live in northern Virginia, and I am a 78 year old female. I have a wonderful pulmonologist at INOVA Fairfax.

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Have you had any side effects from Cellcept? That’s my next round of meds after prednisone.

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bubbiejanet | @bubbiejanet | Aug 9 6:00pm
In reply to @barryh "I am a 69 yr old retired physician who was recently diagnosed with autoimmune pulmonary fibrosis...." + (show)
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I am a 69 yr old retired physician who was recently diagnosed with autoimmune pulmonary fibrosis. I am currently on Cellcept; Elavil 100 mg at bedtime, and gabapentin 200 mg bid to help with my cough. At present, I am not to short of breath, except when I am climbing stairs carrying something. I am an avid skier, with no SOB until I climb the stairs up to the parking lot. I currently have no other sypmtoms, and on a good day (minimal cough), I feel much better.

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Any side effects from Cellcept?

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pschulte | @pschulte | Aug 9 10:01pm

Hi @spiritnsoul, That would be me. I was diagnosed with RA in 2014, but most likely had it well before then. I have Interstitial Lung Disease and Pulmonary Fibrosis. I was still working in 2023 and now I am on oxygen 24/7. How can something happen that fast. For me who when 100 miles an hour and now even on oxygen my oxygen drops. I can’t even finish the 6-minute walk test. I try so hard to be positive, but days are harder than other. How are you doing?

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gogo2 | @gogo2 | Oct 1 12:50pm

My husband has polymyositis ILD
anti PL12 and anti Ro 25 positive and on steroids cellcept tacrolimus Rituxan and Ofev nothings working
It just keeps progressing anyone else ?

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