Interstitial Lung Disease and Autoimmune Diseases
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 Autoimmune Diseases Support Group.
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.
I am taking Actonel (risedronate) once a month to counter the side effects of Cellcept which I am taking for interstitial lung disease.
My pulmonologist told me that “walking is super important” when he diagnosed me with ILD in September 2020. My symptoms are very mild.
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.
I recently saw a YouTube video saying "a recent study shows bromelain (found in pineapple) and MSM (a supplement often used by people with RA) have proven helpful if you have long Covid-19. It destroys spike proteins."
A case of Covid-19 triggered PMR (Polymyalgia Rheumatica). I also have Sjögren's and as a result I may have interstitial lung disease. I'll know more once I complete more tests.
I wonder if the bromelain is somehow helpful for the lungs? I guess that's quite a jump to make.
I'm not sure of the validity of the video I saw. I'll look for it again and see about the source of the information.
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.
Welcome @barryh. You may also wish to follow the discussions in the Lung Health support group https://connect.mayoclinic.org/group/lung-conditions/
That's great that you are able to do the things you love, like skiing. You'd love the ski conditions where I am right now. We just got 12 inches of powder snow.
Stairs are hard. Are you patient with yourself and take the breaks you need as you climb them?
There are 35 stairs (I counted), and yes, I do stop when I am feeling SOB. I have been skiing for the past 50 years, and now, I prefer groomed runs, and I no longer do moguls or black trails.
BarryH
I find that daily exercise has helped me a lot. I exercise every day at the gym on a recumbent bike, a treadmill and various machines. I think it has made a difference for me in how I feel. I have no symptoms of ILD but was diagnosed more than two years ago. I feel great but I realize I am one of the lucky ones.
You have to get bone density regularly checked and take Calcium and Vitamin D daily. I have Zoledronic Acid infusions as required. So far my bone density has been ok.