been awhile
 

Hi,
It's been awhile since I last logged on here. I think it was almost back in March or late April right after my Crisis/Pneumonia hospitalization time. I am currently taking azathioprine which is (Imuran) the generic brand. 4-5 times a day still on Mestinon, and taking Prednisone. Trying to taper Prednisone truthfully. I started Prednisone 60mg daily in March in the ICU. Neurologist has me on a alternate day schedule. 50 then 0, been on that since late November. This taper has really got to me, it's why I am staying on 50/0 it till I see him in February. I've been really tired, fatigued...MG has been flaring. Droopy eye, weak tongue, bad speech + more. I think it's from the taper. Which is really literally draining me. I felt good or halfway there when I was taking 60/10 even 60/0 then when I hit 50/0 my body said. Ooooo no u don't...Hoping it gets better soon. Tapering Prednisone is really, really tough!

Tapering prednisone is really rough. How long since you tappered down to 50mg? For every tapper I did, it took 2-4 weeks for my symptoms to stabilize. Perhaps 60 to 50 is too fast. Maybe you could ask your neuro if you could tapper by 5mg every time.

I suffered worse side effects from the tapper than the MG. WHile I was on the highest prednisone dose, I felt great but could not sleep. When I started to tapper, I has severe muscle pains, headache, dizziness, severe fatigue. I even fell on the steps. I am down to 10mg every other day and have been on that for 3 month and not experiencing any side effects from the prednisone withdrawal. I will be on that for several months more until the cellcept, I just started on, kicks in.

Let me know how you do,
kathie

Hi huntress,
Your tapering scheme is quite unusual, see
http://neuromuscular.wustl.edu/mtime/mgrx.html
for sensible recommendations...!
Maurice.

I have been tapering since May when I started on azathioprine (Imuran) First it was 60/50 and then a few weeks later 60/40 I felt alright...I went down to 60/20 where I stayed for a few months then just recently in Oct I started the taper again. Once I hit the 0 days I have started feeling like poop...It got worse when in late November I started the 50/0...Called my neuro and he wants me to stay at 50/0 till I see him in February. Thing is starting to get sick to my stomach on the 0 days. The 50 days aren't so strong anymore. This past week my breathing feels weird. not like i am getting enough Oxygen, but then I can take a deep breath fine. I wish he would of kept me on at least 10mg and tried to taper the other. Because this is not working, he doesn't think prednisone is doing anything but I can say it has. I can talk on my prednisone days where i struggle on my 0 days. I am at a hard spot because this is just making me feel like a walking zombie..