I will be watching this thread. My neuro will start me on Imuran in 4 weeks, once we've allowed the prednisone to work a little magic. Various threads I've watched here got me to wondering why Cellcept was not his choice. Sorry I don't have any experience or info to share.

They tried me on imuran about two months ago my body didn't like it much lots of headaches and just didn't feel well. But they were also tapering me off of prednisone so who knows which it was. They did tell me they try Imuran first then go to cellcept because of the insurance. I am on cellcept, now and they did 5 days of IVIG about a month and a half ago. From what they explained to me it will take the cellcept several months to kick in that is why the IVIG. Not sure what else to tell you this whole year has been side effects from drugs or the disease. Do watch what your body may be telling you about the drugs write them down and discuss with your doctor for sure. Hope things work out well for you.

Imuran has a track record for MG. Most ( all? ) of the other immunosuppressants are used off label. CellCept's first reported trial in MG did not demonstrate an advantage over placebo, but it was a short one and longer treatment seems effective. Lots of us, speaking both as doctor and patient, prefer the devil we know. Too often major problems with these kind of drugs are not known right away. So we may ask for the newest and most promising and get great results or not. You can depend on it being more expensive.

But uncontrolled MG is a killer and we do what we have to do and all our treatments have their risks, Mestinon being the safest, but not ultimately a treatment for the underlying problem.




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I have been on Imuran for a year. I had a variety of symptoms but none of them were on the very severe level. I felt it started working after 3 months and by six months it was making a big difference. Now at one year I rarely take mestinon and am continuing to slowly ween off of prednisone. I am now at 3..75 /5 mg on alternating days.!!! My blood work has all been good and I do not have any noticeable side effects.
I continue to be cautious about pacing myself and taking a break at the first sign of being tired. If I rest at the first signs, a 20 -30 minute rest is ussually sufficient.

Pat

Thank you for the information. The doctor did say if i needed a boost before the Imuran kicked in I could have another IVIG treatment. He is ckecking my bloodwork every month before he has me increase the dose.

It is usually one or the other with the neuros and docs. It may depend on where you are at , where they are from, what has worked for them or what they have seen before.

Hopefully Imuran will do the trick for you. It will take several months. Be patient. I like the idea of you getting IVIG to give MG that kick in the butt it needs.

My son was just dx with Autoimmune Hepatitis he is 10 and they will be putting him on Imuran.Something i found out is this is the only drug that can be genetically tested with your blood to find out if you will have reactions or side effects..I think this is amazing and anyone going on it should ask for the test..Waiting on my sons results..I take Cellcept for my MG if they find a problem thats what he will end up taking.

Thanks Saysha! Good to know about the test.
Wishing the best for your son.
hugs
sherry

yes, about the blood test with Imuran... mine showed that I was on the high end of the test that may have problems, but we started it anyway, and I did have issues so not longer on it as of May.

Annette

Interesting. Although we do get complete blood counts frequently on Cellcept when we start and less frequent as we go...

I have been on Imuran since last November and it has kicked in, so I am off Mestinon and weaning off prednisone. I am totally happy with the results that I have had with it. The only side effect I have is a little nausea once in a while. One thing to remember is don't go out in the sun without sunscreen and not during the hours of 10:00 to 2:00. I where long sleeves even during the summer months and a hat. Winter sun can be just as bad, so protect yourself.

Thanks for the good advice!!
Carole

My doctor had me go from100mg of imuran to 150mg a day because of my weakness in my face and mouth. I have been have problems with talking. I am also on mention and prednisone. Here lately I have not been feeling good at all. I am wandering if anyone else have been having problems with imuran.

My husband started Imuran on Tuesday. Crossing my fingers that he gets good results.

Good luck to him!! I have been on it now for a week and no side effects!!! Not much change in symptoms yet.