Hello all - I was diagnosed with MG in 1992 and since then mestinon has been a saving grace for me - 2 tablets every four hrs. I had two occasions when my Dr added prednisone (including now) because about 3 weeks ago I have massive generalized weakness - went to ER and got prednisone IV.

My Drs wants me to now give Cellcept a try - which terrifies me because I have heard so much about its side effects. So I'm now weighing - the side effects of cellcept - or - the much limited daily routine I am now experiencing?

I'm in management and so my work schedule is usually 9-10 hrs a day, with a bright and early start dropping my son off to school - coming home from work for homework time and a little one-on-one play time. But in the past few weeks I have been unable to keep this schedule - I no longer drop my son off to school and I've had to hire someone to oversee his homework. I find this somewhat depressing. So the question is - will cellcept get me be back on the road I've been used to or do I accept this more limited schedule.

I meet with my neurologist soon to discuss but your thoughts will be greatly appreciated.

Thanks,
Llakel

Hello there! First let me say welcome to this site! You are really going to meet some wonderful people here on neurotalk!

I too was worried about Cellcept, but have been on it 2-3 months and it seems to be OK so far. In fact, my neuro just upped my dose to 2000 mg a day - it was @ 1000, but kept my prednisone @ 15 mgs a day.

I am still new to this whole MG thing (diagnosed March, had a thymectomy in April) but had a crisis and was told my thymectomy was my only real chance @ regaining my former life..........so I did it......

When I spoke with my neuro regarding Cellcept, he assured me that if it was his wife/him that suffered from MG he/his wife would definitely take it. Apparently (per Dr. Ibrahim) it has the same effect as prednisone without all the nasty side effects of steroids (weight gain, moon face, manic episodes, etc).........

I don't know if this has helped at all, but hope you do whatever you need to in order to feel better soon!

Hang in there!
Erin

There are quite a few people on this site who take Cellcept and know a lot more than I do - hopefully Missygirl will know something about it........

Hello Llakel

welcome to neurotalk!!!!

I started cellcept in November 2007, and have just recently increased it to 2000mg a day.
I considered the benefits of taking it, with the side effects. As I was quite bad when I was first diagnosed (back in December 2002) I dont want to ever go back to that.

I did start out on azathioprine, but that didn't seem to be working to well for me.

Its so hard to compare each person, as usually our MG varies so much, as does how the medication works for us. Usually you need to trust your doctor and work out a regime with him/her.

I hope this helps a little, but please feel free to ask as many questions as you want, we are usually all more than happy to help!!!!!!!!

take care
redtail

I've been on 3000 mg of CC daily for about 6 or 7 years. I can't say it's done a whole lot for me, but more than anything else I've tried. There is the new black box warning on the drug concerning PML as a side effect (with almost certain death if you get PML). Other than that, it's fairly low on side effects. LOL

Good luck with your decision.

Missy

Thanks so much for the info. - sure gives me a better view of where things might be headed. The PML warning sure got my attention!

Hoping to strike it rich and take a year's vacation - maybe MG might get tired of me relaxing all the time and go away!:rolleyes

Hi Llakel,
When Mestinon has to be supplemented, steroids are usually prescribed, but for the shortest time possible, they are rather fast acting (a few months) but they have also many negative side effects: osteoporosis, glaucoma, cataract, weight gain, diabetes…Immunodepressors like Cellcept are also used but they are slow acting ( several months, maybe a year…) that is why both are prescribed at the same time, later steroids are tapered down (idealy to zero) and you are left with the immunodepressor (plus the Mestinon…).
I'm on Cellcept (2 g/day) since 14 months and was reduced to 1.5 g/day 2 weeks ago.
I' m also not sure about the effectiveness of Cellcept for my case, but at least I do not have any side effect to report.
Maurice.

Hello!

How are you doing today? Are you feeling better? What has your doc said (if anything)?

THings have been crazy around here! I'm going back in for more IV IG next week - YUCK! I was really looking forward to seeing my Grandparent;s this weekend, but maybe next weekend - we'll see!

When you have some time, let me know how you are!

Erin

Thanks for asking.
My local Dr has stopped the prednisone and I'm currently on 120mg mestinon every 4 hrs. I have some really good days but if I try and do more i have a really awful few days afterward. I don't see my neuro until December - so I'm taking things reaaaal slow until then.

Hope you are feeling better.

Llakel

I am so glad you are feeling better! Has the Mestinon helped any? Try and take it with food if you can or you may have some tummy issues ( I learned that the HARD way)

Are you ready for the holidays? I just love this time of year! My baby is here with me all week and we are having a blast! I am decorating for xmas - one day left of hard work and then I'm done!!!!!!

My hubby's family will be over for Thanksgiving this year, so I need to get it all done tomorrow.

Take care and write me soon! I love hearing from you!
Erin