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leyley29 avatar

Ongoing shortness of breath, chest tightness and inflammatory chest

Lung Health | Last Active: Jun 2 11:21pm | Replies (23)
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@ers12345 You sound lilke you could have Hypersensitivity Pneumonitis. High-resolution CT scan was done, correct? What did report say?

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Replies to "@ers12345 You sound lilke you could have Hypersensitivity Pneumonitis. High-resolution CT scan was done, correct? What..."
ers12345 | @ers12345 | Jun 2 1:21pm

@handsdown
Congrats again on making it through to the other side!
Do you mind me asking how long you were on CellCept? Were you taking the brand name or the generic mycophenolate? And how long have you been off medication now?
When did your lung function tests and DLCO start to improve? Did you notice changes after a few months, or did it take closer to a year?
My doctor isn't 100% sure yet what is causing my lung inflammation. What she does know is that I respond well to steroids, but she wants me off them as soon as it's safe to do so. She's using CellCept as a steroid-sparing medication in the hope of getting the inflammation under control, stabilizing my lungs, and preventing future flare-ups.
She keeps saying we have to take this year by year, and I'm really hoping it works. Hearing stories like yours gives me hope that I can get stable, get off the medication one day, and move on with life too.

Thanks for sharing your experience, it really helps.

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