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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | |||
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Kendra,
My sx still get bad, but that's how it's always been, all throughout this prednisone-period...So I feel like tapering from the pred. wont make much difference...I feel like it hasn't ever really helped...I totally relate to your not wanting to take Imuran/Cellcept...I'm supposed to have already started Imuran, but I haven't...I want to see what this other MG specialist will say, then I'll make my decision... The only thing that seems to have gotten worse is my breathing (which is a big deal, I know)...But I don't think that's from the taper...I think that there is actually something wrong with my lungs...Ever since I had my sternotomy, I've had intermitten wheezing and really bad GERD. I think that the acid might actually be leaking into my lungs sometimes, it's so bad... On that note, I was trolling around the ALS forums (i used to be a member when I thought I had ALS) and I found that a lot of them are taking N-acetylcysteine for their breathing...They swear by it...It's apparently also very good for anyone with lung problems (COPD, emphysema, interstitial lung disease, etc.)...So I ordered this effervescent type from PharmaNac, and I just started it last night...It helped with my phlegm a lot...It's 900mgs, twice a day...You dissolve it in water or juice...It's a precurser to the antioxidant glutithione...I will let you know how my progress is going on this as I know that you have breathing issues too... Btw, how are your breathing issues? Is the ILD clearing up at all since stopping that med.? Ttys! Nicky |
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