Hi just had a check up today. Dr says I'm not doing good at all. He havee wants me to go in and have 5 more plasma. The prednisone isn't working so he is putting me on azathioprine. Anyone else have any experiance with this drug? If so what was your outcome on this. Its Scary. I just want to know what others are going through.

I've been on azathioprine for about two years. It might be keeping me from getting worse--it's hard to say. The last three times he upped the dose (I'm up to 250 mg now) I had good spells that lasted a couple of months.

My doctor told me it would take at least three months to start working, but probably six months--or even up to a year.

Some people can't metabolize azathioprine, and it's toxic for those people. Most neuros will give you a blood test before you start taking it to make sure you're not a slow metabolizer.

I have not had any side effects from azathioprine at all.

Abby

Well that's good news and thanks for the warning. I was in the hospital for 4 weeks, they probably checked me for the slow motablism but I will call my doctor tomorrow before I begin taking it. Cuz toxic is usually death and I like living. Lol. Isn't aza the same thing as immutable? Read it nonlinear somewhere. Do you still have as many symptoms?

Thanks
Lisa

Lisa, You absolutely have to have the blood test. It is called TPMT. Your doctor should be aware of this already.

I'm sorry you're doing so badly. Imuran/Azathioprine can take some time to kick in, so you might still need other treatments if you get worse.

Sometimes Imuran works and sometimes not. Some people do better with Cellcept. It all depends. Imuran has been around much longer and is the more "tried and true" immunosuppressant.

I hope it works for you! Take it easy. You don't need to get worse.


Annie

Hi, thanks for telling me. Called my doctor or had my mom call because I have a hard time talking. They did the TPMT blood test and I was good. I am going to start my azapriothin in the morning. He started me on 100 Mg in the morning and 50 Mg at night. I just want to feel at least a little normal like all of us with myasthenia do. Having 5 more plasmas due to my weak swallowing and the doc saying your not good that prenisone may not be working the way they all thought it would. Thanks.

Lisa

QUOTE=AnnieB3;977515]Lisa, You absolutely have to have the blood test. It is called TPMT. Your doctor should be aware of this already.

I'm sorry you're doing so badly. Imuran/Azathioprine can take some time to kick in, so you might still need other treatments if you get worse.

Sometimes Imuran works and sometimes not. Some people do better with Cellcept. It all depends. Imuran has been around much longer and is the more "tried and true" immunosuppressant.

I hope it works for you! Take it easy. You don't need to get worse.


Annie[/QUOTE]

[/QUOTE]
I was on it for a long time before I had problems with it I also can't tolerate prednisone to many side effects to list but needless to say I am not taking anything that requires 10 other drugs to combat the Side effects I hope u do well with this have u tried ivig. I have had great results with it

Was supposed to start azathioprin last week I haven't yet. Too scared to but I know I will have to. The ivig didn't work on me. I'm getting a catheter surgically put in tomorrow morning in my neck to do moe plasmapheresis. Had 5 a few weeks ago but doctor says I'm still weak. Today for the first time I fell into the house my leg gave out. It hasnt done that for a long time. Wonder if its the prednisone. Maybe its causes mestinon not to work so much. I take 8 hour pyridostigmine 60 Mg. Also I'm under a lot of stress. My dads in which I live with does nothing to help me. He thinks bringing me to the doctors is enough. He even left my mother when I was fighting for my life when I died. Its a long story. Too long.
[/B][/B]I was on it for a long time before I had problems with it I also can'tolerate prednisone to many side effects to list but needless to say I am not taking anything that requires 10 other drugs to combat the Side effects I hope u do well with this have u tried ivig. I have had great results with it[/QUOTE]

Hi,

Are you saying you are taking 60 mg of mestinon every 8 hours? If so, that is likely not enough. I think most dose every 3-4 hours. I suggest you run that by your doctor.

MG is just tough. I think it's very important to try everything you can to get improvements, but sometimes meds and procedures just don't work very well, no matter what. You sound fairly unstable right now, so if you can work closely with your doctor in the next weeks, perhaps you can get some relief. Does your doctor email with his/her patients?

Keep fighting! You never know when a treatment will work or when your body will decide to improve spontaneously. Always be open to new ideas!

Hi, I was taking mestinon every 3-4 hours. The doctors told me that was too much so they supposenly gave me 8 hour pills. But I didn't think they had 8 hour pyridostigmine. I'm on 60 Mg prednisone daily. A iron pill because being in the hospital a month can do that to you.hospital/woo much blood taken Aniema. Plasma did help though cuz mine is vary Bulbar/swallowing/talking. I can eat and swallow though my speech is on and off still. Swallowing was weak when I had my xray/swallowing test but its going down right. Again like we all know some days are better than others. Falling is vary Scary because I have stairs and then another stair into my home. always that last step into the home. But its like ahhh I haven't done that sińce I wasn't on mestinon. Before I was diagnosed. I have been under a lot of stress so that could be part of my problem.

Thanks
Lisa

To the best of my knowledge, there is no such thing as 8 hour mestinon. There is Timespan, which is 180 mgs, which some use at night.

Sorry you're having such a tough time. Maybe a chat with your doctor or even pharmacist (about the mestinon) would help.