Title is for anyone with questions becuz prednisone tapering is a long process and a hard one at that. I am a newbie at the taper only been on pred since march cuz of the phnemonia crisis lung thing...they started me at 60 Mg daily. Neuro is lowering it now 10 Mg odd days even days I take 60 still. 2 weeks each 10 Mg taper. I'm feeling tired by afternoon...weakness in arms and legs but not constant more on and off. Could this be prednisone taper? Sad thing is my plasma is running out too...almost been 1 month since my last plasma...


Lisa

My neuro has me tapering by cutting down 5mg every 2 weeks. I am now at 30 mg per day, every day. He is not having me do the odd-even day thing. I am feeling more tired and having more pain in my muscles but I attributed it to the increase in temperature.

kathie

Huntress, the weakness could be due to either the pred taper or lack of PLEX. There really is no way to tell for sure. Are you scheduled for more PLEX?

Hi, no more plex scheduled. I asked about an ivig to see if those will work but doc said no.
They tried the ivig when I couldn't swalllow at all but the only thing that worked was the plex to bring back the swallowing. Right now the doc is hoping that the azathioprine kicks in but I only started those on the 8th of last month. Its like feeling like superwoman then bam ur down again with the Plex. They cut the mestinon timespan out I used to use at night cut my pyridostigmine down to 3x a day every 8 hours. I really don't want another catheter in my neck the old wound hasn't even healed yet and its still bruised for more plex that is. Why I wanted to try the IVIG b4 I get too weak...

Wow, sounds like they are really cutting back on your meds, whether you need it or not! Sigh. Sorry to say it, but my thought is "scond opinion time.". My gut feeling is that your current doc is perhaps not the best versed doc in MG treatments.

Good luck!

Lol funny you should say that. The neuro I have now is the top where I come from he even is a top member in the myasthenia gravis org. My old neuro refered me to him for a second opinion. But then the whole crisis thing, why I'm on prednisone and they cut my mestinon. Too much saliva and I couldn't swallow it at that time. Last time I saw my neuro he told me I could take my pyridostigmine if I felt I needed it more. He also said he is going to get me better that even though i am a hard case one of the worst bulbar generalzed he hes seen. The one thing I want back is my voice that is a daily struggle even with the plex my voice struggled. One thing about MG everyone of us id a little snowflake unique to our symptoms and the meds we need to live.

Hi Lisa,
I also feel uneasy about the abruptness of cuts in your prescriptions.
You could see for example
http://neuromuscular.wustl.edu/mtime/mgrx.html
about pred tapering, azatropine latency and Mestinon dosage...
I also had a severe generalized MG at the beginning and apart from pred and Mestinon, Plex works wonderfully for me contrarily to IVIg.
I hope you quickly get more appropriate prescriptions.
Maurice.

The longer one has been on prednisone the slower the taper I think. I started only at the end of march on 60mg so its been 2 months. I think I am going to call and try to get the doc I had in the hospital. She listens and she gave me numbers to call 24 hours a day. I like the neuro I have now but sometimes a woman needs a woman to talk to...another strange thing I haven't had my menstrual since march. Not pregnant...any other gals have that issue on prednisone? I told my neuro he told me to see a gynacologyst. Why I want the other neuro too.