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Asthma or interstitial lung disease
Lung Health | Last Active: Jun 8 4:20pm | Replies (23)Comment receiving replies
Hi there. I was diagnosed with ILD in August 2020. Initially I was prescribed steroids for several months, after which I was prescribed Cellcept, a steroid reducer and often used with transplant patients. My Cellcept dosage has been decreased and I am now on 500 mg a.m. and p.m. My PFT's (pulmonary function tests) have been normal for at least the past six months. So, there is light at the end of the tunnel! The best advice my pulmonologist gave me in 2020 was "Walking is super important." I walk every day and consider this just another prescription. I think this might be why I seem to be doing so well with ILD. I feel great. I hope you have a good pulmonologist. Please, if you feel up to it, walk every day. I wish you well.
Replies to "Hi there. I was diagnosed with ILD in August 2020. Initially I was prescribed steroids for..."
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@maryecox
I am so happy to read your post. I am so happy you’re feeling better as well.
How are you now and what doese are you on ?
I am in the similar position as you. I have lung inflammation but they are not sure why, but like you steroids help and I am going to start CellCept in two weeks as a steroid sparing drug and hopefully stabilize my lungs . How long did it take you before your lungs were stabilized? What dose did they start you on? How were your symptoms? Are you very careful with the sun?
I am hoping my lung function test back to normal soon, at the moment (my DLCO is 59 and 55 in February.
I would love to hear more about how you found the medication at first and when did it settle or did you not get side effects.
Were you nervous to start or did you just get on with it. Did you find that you had to alter your life with the sun sensitivity and protecting your skin from the sun?
Looking forward to hearing from you.