I have been on cellcept for almost 3 months after 2 months i noticed a smidge more strength and stamina (plus the beautiful 75 degree weather helped too)....so foolishly i started to do a little more ..took kids to park 3 days in a row, a little yard work, on top of the usual housework. well I crashed after 5 days of this, super weak all over and difficult to eat, talk and short of breathe, took me a week to recover. still waiting for that smidge of extra strength to come back.

the weather is cooler now so i don't know if it was the cellcept or the warm weather that gave me the boost. However I have had no side effects from the cellcept and am being optimistic that it is trying to work!
Will keep you posted. Karen

Thanks Karen. I'm my worse enemy too. On days I feel good, I do too much. Good luck! Maria

Cabbage7.... Thanks it's been a long road I received my MG diagnosis in July I currently take 42 pills a day and I'm only 37 good lord. I am on Prednisone 20 mg a day I was on 60 mg a day but it was cause heart palpitations so we had to cut back, I'm on Mestinon 120mg every 3 hrs and now Cellcept 500 mg a day and will increase to a 1000mg on my next visit on 12/7. Nothing has been able to control my MG symptoms so I'm also doing IVIG every 2 weeks. I will keep you up to date and will let you know how this goes.

Goodness, You take 42 pills. Do you have other conditions? Mestinon causes muscle weakness also, maybe you take to much. I thought that when you start taking Cellcept you could taper off the Prednisone. That is my goal. Stay strong and I will keep you in my prayers.Cabbage7

Cabbage7 yes I have arthritis, Barrett's Esophagus, depression, IBS and now they think I have something affecting my central nervous system so I'm getting a MRI on c spine because I had abnormal results on my last Romberg and Hoffman test so there is something in addition the the wonderful MG as if I didn't already have enough problems. I appreciate you keeping me in your prayers. This group has been a god send for me to have others to talk to about all this.

I have been taking Cellcept for 2 years and take 3000mg daily. I know everybody is different but it actually took care of a lot of my other problems as well as the mg. My seasonal allergies are very minimal, my stomach issues have disappeared, and my arthritis is lessened. My mg has worsened in some ways so I do take other medications; mestinon - 180mg daily, IVIG every 4 weeks, and now rituxin. But the cellcept was a real blessing and I can definitely tell a difference in my every day life. It took about 4 months for it to really start working.

Thanks for the info! I wish you well!

I hope no one minds a very newbie type question on cellcept.
At what point does that get tried? my understanding is mestinon
first, then prednisone, then is it cellcept? Then IVIG?
I know that everyones MG is VERY different but I am just wondering.

I hope everyone has a good day!!

Weathrgirl.
As with so many things, it depends on the doctor and the patient-age, severity, inclination, response, side effects, availability of drug, familiarity with drug. etc.

But in general: mestinon, prednisone, IVIG, PLEX =fast (early in treatment)
immunosuppressants including CellCept= much slower acting (long term treatment) prednisone is also included here but is rarely used long term unless the dose isvery low due to major unwanted side effects b.

b, thank you so much for the answer! I have started keeps notes from things I learn on this thread. I think there is going to be alot of notes!! Sheri

Hi Cabbage7,

My father started taking CellCept at the end of August because Imuran was making him anemic. Since then he's had little side effects. His appetite has changed a bit like bear57 in that some foods sound good and some don't and my father craves sweets all the time. However my father is also on other medications - prednisone, flomax, forteo and protonix for other health issues so I don't know if it has to do with any of those. Other than that there are no other side effects.