[kristy]

Hi,

I am going to a neurologist at an MDA hospital that has suggested taking myfortic. Does anyone else take it for MG? He said that it is faster than Imuran, and does not cause liver toxicity. I did a search on here on this forum with no results of myfortic found. The side effects that he listed are diarrhea, lymphoma of leukemia, infections including severe brain viral reactions, and bone marrow failure. It's either take this along with my 20mg daily prednisone, or up the prednisone to 60mg tapering down. All the drugs that are available to take for myasthenia seem so harmful. The side effects of the immunosppressants are rare, but they are scary none the less.

Any comments are appreciated.

Hope you all are well.


Kristy

[Joanmarie63]

Picking chin up off my keyboard....

No, I have never heard of the medication you wrote about but if my Dr. wanted to give it to me I would slap him up side his head for even thinking of it. LOL

Remember YOU have a say in what meds your Dr. gives you, if you don't want it, than you don't have to take it and that includes upping your Pred.

I hope your weakness starts improving soon, without increasing your pred.

[Pat 110]

Sorry Kristy, haven't heard of that before. What a big jump in the side effects, going from diarrhea to lymphoma of leukemia...I hope someone here can help you or you find something on the internet. Take care and hope you start feeling better.

Hugs,
Pat

[kristy]

Originally Posted by Joanmarie63

Picking chin up off my keyboard....

No, I have never heard of the medication you wrote about but if my Dr. wanted to give it to me I would slap him up side his head for even thinking of it. LOL

Remember YOU have a say in what meds your Dr. gives you, if you don't want it, than you don't have to take it and that includes upping your Pred.

I hope your weakness starts improving soon, without increasing your pred.

LOL!!!! A slap on the head would be justified for all the side effects that he listed, haha..

I have issues with prednisone (it works ok, just don't like the side effects), so myfortic was another option that he offered last time I went to him. Prednisone has helped alot, I just don't like taking it (or any other medication for that matter). He thinks myfortic is better than Imuran, but I haven't seen/heard about anyone else using it for MG. The website for it lists it as having the same ingredients as Cellcept, and for it being used for autoimmune diseases. He is a good doctor (specialist), goes to conferences, and sees many people with MG. He has also been good about letting me make the decisions. He just doesn't have any options that don't include some kind of prescription. This med just sounds dangerous, but Imuran, Prednisone, and any other Rx option we have to choose from all have their own nasty side effects.

Thanks! I hope you are strong, and become stronger each day.


Kristy

[kristy]

Originally Posted by Pat 110

Sorry Kristy, haven't heard of that before. What a big jump in the side effects, going from diarrhea to lymphoma of leukemia...I hope someone here can help you or you find something on the internet. Take care and hope you start feeling better.

Hugs,
Pat

Thanks, Pat!

I hope you are well, and strong.


Kristy

[AnnieB3]

Kristy, Have you read the entire insert for the drug?

Yes, you need something else to help you but what about IVIG?

All drugs have side effects but some are worse.

I hope you can figure out something that will make your MG better.

Annie

[alice md]

myfortic (novartis) is cellcept (roche).
mycophenolic acid is the active ingredient.

this medication has been shown to be no better then placebo in two randomized controlled trials in patients with MG. and as far as I know is not widely used in other autoimmune diseases. it is mostly used in the solid organ transplant setting.

yet, there are some neurologists and patients that will tell you that it has worked wonders for them.

I personally refused to even consider taking a medication with such a significant side effect profile, without clear evidence (and actually the opposite at this point) that it really works.

there is only one study that I know of, with Imuran. and this study showed that in patients that had a good response to steroids, and were put on Imuran as a steroids sparing agent, there was a good and stable response within a year or more, when there was a close follow up, and adjustment of medication according to the symptoms. this study was done on pretty classical acethyl choline receptor seropositive patients, and it is hard to infer from it regarding other patients, who are less classical.

and you are right it sucks to be ill and to have to take any medications. and the illness has to be worse then the treatment in order for it to be justified.

hope this info. helps,

alice.