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

Long term prednisone usage
 

Nicky,
I hate that the pred didn't help you but at least that makes the decision to come off of it easier. When I first started it I felt like my old self but after a couple of months the side effects started surfacing and it didn't seem like I felt so good anymore as much as I felt like I was running like the Energizer bunny even when my body was exhausted! I think your smart to get a second opinion before starting the Imuran. My Dr said if my symptoms come back we will have to start some sort of immunosuppesant too but I sooo don't want to do that. My biggest issue is that I am starting to notice my eyelid is drooping again when I am tired. When I was on 60mg of pred that totally went away. I also notice my weakness is worse but so far the Mestinon takes care of that.

That is very scary about the wheezing and GERD. I was having some major problems with those things too but that has gotten better since stopping the Agrylin.

Yes please keep me posted on the effervesent you ordered. I will definitely consider getting that if you see improvement. I haven't seen alot of improvement since stopping the Agrylin except that I think my breathing is better throughout the day but gets worse by evening. It is a weird feeling like my rib cage area feels so weak and sometimes it feels like it is being squeezed. I am still hoping as time goes by I will see more improvement. Talk to you later.
Kendra