Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Alonetilnow 07/01/2011

Earlier this week the doctor called in a prescription for imuran. I am already taking mestinon, prednisone, and cellcept. I had read here as well as on some web sites for imuran that cellcept has an interaction with imuran so I was afraid to take the imuran. The sites didn't say what kind of interaction but it was enough to set off an alarm in my head so I didn't take it.

I sent an email to my doctor and he called me last night to discuss my concerns expressed in my email. He told me that my myasthenia was so out of control that I was near the edge and it was very dangerous for me. He said that I was in an extremely fragile state.

He said that imuran is similar to cellcept and is meant to accomplish the same goal. Since the medications I'm already taking hasn't gotten the myasthenia under control but instead I have been getting much worse that he wants to use both the imuran and the cellcept together and then as soon as possible take me off of the prednisone.

He said that, like all medicines, there is potential for side effects but that we have to get the mg under control before it is too late. Taking both cellcept and imuran will be lowering my immune system tremendously so he is going to be taking frequent blood tests and keeping a very close watch on me. I have to go in for my first blood test in 10 days.

I sure hope this works.

newmugg 07/01/2011

So sorry you are having such a hard time of it right now. I would certainly be aware of new symptoms that could be drug reactions and call your Dr. immediately.
Has your Dr. suggested a schedule of IVIG or Plasmapheresis? When symptoms are severe, they sometimes will put you inpatient for either procedure and sometimes both. I had plasmapheresis every other day for a week then 2X a week for a month, and now once a week.
The only time I had IVIG back to back was before surgery.
Thinking of you and wishing you the best!
~sherry

txkiki53 07/01/2011

Wow.. my friend, I pray for better days for you, as Sherry states keep track of your symptoms but glad your doctor is trying to get the situation under control. I know I go back to neuro on the 14th and afraid as to what he might say cause I have had a really bad last couple of months, and worse this past month. uggg. prayers to all of us.. Annette

deleted_user 07/01/2011

Wow I'm very sorry your going through this. I too am on the same types of medication but the cellcept and after my IVIG I am finally under control. I too have to do bloodwork every month to keep track of my levels since the imuran is absorbed through your liver. If you need any support feel free to write and reach out we've all been there at some point and it seems to me that everyone has been through something so keep up the good work your dr seems to be supportive! I will be thinking of you good luck the right meds or combination of them will happen.... Sadly prednisone is a goo but awful drug I've had a year and a half of going up and down and attempts to come off it but unfortunately I cannot get any lower than 20 :(

cgreens 07/01/2011

I have never heard of cellcept and imuran together until I read this post of your doctor proceeding this way and have now seen testimony online of this being done with some people. In messages to you, I told you that you cannot take both at the same time. Afterall, their purpose is one and the same, just with different composition. I really don't know the actual dangers of taking them both at once..Obviously, I am not a doctor. So, I am sorry.

That being said, if your doctor says your situation is close to being dangerous, why is he giving you two similar long term immunosuppresants now? Especially when you haven't been on one(cellcept) long enough to even say if it is working?

I am not a doctor, but the things I mentioned to you in the private message are the way I thought he would've proceeded. More mestinon, adding cyclosporin, or getting you into IVIG as mentioned by Sherry.

Please keep us posted as to what is going on. We want to know how you are doing. Best wishes always,

TJ

cgreens 07/01/2011

All I hear about nowadays in regards to Imuran and Cellcept is either one, but not both and Cellcept replacing Imuran in many cases...

MGAWP:

http://www.mgawpa.org/pdfs/Medical/Cell%20Cept.pdf

deleted_user 07/01/2011

To all of you with MG our prayers are with you, my husband found out he had it this year after being in the hospital with a breathing crisis, he has been on prednizone 80mg one day 60 next day he has been coming off slowly now on 10 and 80, then 0 80 then I imagine he will lower the 80 . He is also on Imuran 100 mg twice a day, mestinon 60 three times a day, being a diabetic the meds have caused the sugar to go crazy, but our GP is working with us on that. He has developed a eye infection and now a bladder infect. He sweats a lot and I don't know what is causing that. He has a good day then a day he has no energy. He is in rehab 3 times a week. Any suggestions.

cgreens 07/02/2011

Alone as Razorback has mentioned, her husband had a crisis and he is on 80MG of prednisone, which would be yet another way of proceeding to push this nasty disease back. I am sorry if I just don't understand the way your doctor operates. You having trust in your doctor is important, and perhaps he knows what is best for you. I am just giving an opinion. No matter the case, of course I wish you well.

Please keep us posted.

Chroux 07/02/2011

I agree with all those that feel this is a strange resction by your docyor. If you are that much 'on the edege' then I would have thought that PLAX or IVIG would be the first line of treatment, it has been for most of us here if I read the post correctly.

Good luck, and watch your symptoms varefully, get to an emergency room if required. A full resp. crisis is no fun at all

REgards

Christo

deleted_user 07/07/2011

my MG severity was one in the same with yours, none of the medications or treatments were working. i had a major crisis in march 2011 almost killing me. in the hospital they used the Plasmapheresis treatment both saving my life and putting me in remission (for how long i dont know). so in my experience this treatment works. im still taking azathioprine for now just as a back up untill we are totally sure that it has subsided.

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