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

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

Hi, I'm sorry if I'm repeating anything the others have said, I couldn't read all the responses.
I was told, anything 7, and under was pretty safe. I was also told that anything 10, and under was pretty safe. But the 7 and under was told to me by a doctor I trust very much.
I've been on prednisone for 5 years straight, daily. Prednisone is a wonderful drug, but it causes a lot of problems too.
I say, read as much as you can on it, and ask your doctors what their oppinions are too.
Best of Wishes.
Love Lizzie