I think that his focus may be more against prednisone than for Cellcept. Because prednisone has so many long term side effects many doctors prefer to avoid it if they can. As long as you are still on the prednisone while you are waiting for the Cellcept to kick in and supplimenting that with the IVIG you should be okay.

I am very excited about the progress being made at the small hospital that I work for. We have never had plasmapharesis before but my doc has pushed so hard to get that started in the 11 months with us. Today we did our very first treatment. It was awesome and I was so happy for the patient that got it. He MG struggles have been insane. I can't wait to see her progress over the next couple of weeks.

I wish you good luck though I know that it is scary making that leap. I started cellcept in February and remained on my prednisone. In April I started lowering my prednisone and I am currently only on 10 mg per day. I have some really rough days with the prednisone being that low but I've stopped gaining so much weight so I guess that's my silver lining. I started on 500 mg cellcept twice per day. About 2 weeks ago we increased it to 500 in the morning and 1000 in the evening. The verdict is still out for me and cellcept but I've felt much worse than I do now so I guess it's doing something.

Please keep us posted on your progress with the cellcept and IVIG.

Aloha,
Angie

I am taking so many pills it is getting to be a problem keeping track. I just got some 10mm Prednisone pills - very similar to the 5 mg Presdinsone pills.

I'm on cellcept 500mg/day plus ivig every 2 weeks. I do not take prednisone at my request . I'm not too excited about increasing cellcept because it depresses the immune system, but it could be in my future, all in all, I'm getting stronger.
Be well,

Dan, have you and ivig before? I had one course and it made me feel so much better!

Angie, did the plasmapheresis patient fail to improve wih ivig? My doctor decided to use ivig over pp to avoid needing a central line. Many hospitals will do pp through a peripheral Iv, but ours will only use a central line. My mother in law is a dialysis tech and assures me the pp do very well during the pharesis.

Do any doctors try to avoid cellcept and other immunosuppressants in patients with cancer history? I haven't had cancer but there is a lot in the family.

None of meds to lower immune system function are without serious side effects. Prednisone usually gives the quickest relief and is the best known MG medication (IVIG and PLEX are faster short term fixes that have some side effects too--and are difficult to get because they are very very expensive).

Generally, the newer the drug the less side effects --not because that is necessarily true, but because the long term side effects may not yet be discovered. Prednisone and Azathioprine (Imuran) and methotrexate have been around longer than Cellcept (mycophenolate mofetil) and so the problems with them are better known.

Anything that lowers your immune system is going to allow other problems to occur including more susceptibility to cancer. So whatever you choose with your doctor, you will need to be very careful to monitor your ongoing health.

I chose prednisone to knock MG down quickly and had planned to move to Imuran next. My neuro was equally positive and negative about methotrexate, Imuran and cellcept and left low dose prednisone as a reasonable course too.

Good Luck

Thanks all. These are exactly the type of answers I was looking for. You all are going through what I am.

The doc asked me where I want to be in a year. I would love to be in remission, but realistically I hope to be on as low dose as possible of all of this stuff.

I had some upset stomach this morning. I feel fine now. It says to avoid antacids with aluminum for celecept. I like Tums better anyway.

I am doing fine right now, but still can't wait to eat more than 700 calories per day without worry. Late at night it is hard to swallow still and I get a ton of saliva now.

Also, it could have been a fluke, but I noticed a metalic taste within a second or so of taking the Celecept. I only took two

I don't notice a metallic taste when taking Cellcept. I have to have a small bit to eat when taking it. Like a small piece of cheese.

I feel a lot better since I have started taking it

Thanks Sami,

My General started me on Prednisone to work up to 60mg per day. The new neuro said to top it off right now at 40mg and don't go above it. I think he wants to see if the Cellcept works, but I really want immediate relief.

BTW, I start IVIG on Friday and will also finish it on Saturday. I have mixed feelings about it. I am glad to see some relief, but know it is a short-term thing. It will be at a clinic up - maybe take something to read.

I guess my biggest question now is why stop the titration of Prednisone at just 40mg? I want to kick the MG symptoms (and what causes them) in the butt.

ABOUT 2 MONTHS AGO MY MG STARTED TO GET WORSE, SO I SEEN MY NEURO. LAST THURSDAY, I WAS ON FOR THE LAST 6 MONTHS, TO TAKE 20- 40 MG OF PREDNISONE A DAY ONLY WHEN NEEDED, THER WERE WEEKS I WOULD GO AND NOT TAKE ANY PRED,,,JUST KINDA TOUGHED IT OUT I GUESS,,THERE WERE DAYS WHEN JUST 20 MG WOULD WORK GREAT JUST TO HELP ME MAKE IT THROUGH THE DAY AT WORK,,,SOMETIMES I WOULD TAKE 40 MGS A DAY TO MAKE IT THROUGH THE DAY,,,,AS I SAID ABOUT 2 MONTHS AGO IT STARTED TO GO DOWN HILL I GUESS YOU COULD SAY,,,UP TO 40 MGS A DAY EACH DAY SEEMED TO NOT WORK FOR ME...AS OF THE LAST NEURO VISIT HE BUMPED ME UP TO 80 AS A MAX AND NO MORE THAN 80 MG OF PRED...I FIND MYSELF TAKING 60 A DAY, OF COURSE MY BLOOD PRESSURE GOES WAY UP, SO EXTRA BP MEDS I GET TO TAKE( SIDE AFFECTS)..NOT REALLY READY TO TRY THAT EXTRA 20 MGS OF PRED, TO MAKE IT 80 MAX, BUT I MAY HAVE TO.TODAY IM VERY WEAK, TIRED, ETC,,,NORMAL GRAVIS HITTING...I THOUGHT MY NEURO MIGHT UP THE CELLCEPT FROM 1000 A DAY TO 1500 OR 2000 BUT HE DIDNT....SO I REALLY DONT KNOW WHICH IS BETTER...I KNOW THAT LAST YEAR AT FLU SEASON I GOT THE FLU AND IT WAS THE WORST FLU I EVER HAD,,,,(CELLCEPT - AND LOWER IMMUNITY I GUESS)...SO I GUESS THE BEST FOR ME IS THE PRED...IN WHICH I TRIED TO AVOID BEING ON AT ALL,,,,BUT HERE WE GO WHERE SO MANY OF YOU HAVE BEEN DOWN THAT ROAD WITH THE PRED,,,,MOVE OVER AND MAKE ROOM FOR ME ON THAT ROAD...LOL TIME WILL TELL.....

I would go as high as needed to reduce symptoms as much as possible then lower the dose to a small maintenance dose to be use in conjunction with the immunosuppressant to perhaps slow down progression.

Revelationman, I hope things get better for you fast. Thanks for the info. I have had some pretty bad flu seasons and don't look forward to that.

This last season I turned on the humidifier on my CPAP (with C-flex) and woke up with water in my mask, mouth etc. It was horrible, and I wasn't even affected much by MG back then.

Elinora, I hoped to titrate up on Prednisone, but after reading some of the comments on it, perhaps Cellicept is better for the long run.

We need a better solution that suppressing the whole immune system to go after one antibody. More research needs to be done - and will be some day.

I have ONLY been on Cellcept as a monotherapy for about 2.5 yrs now. Never have taken Prednisone. I did IVIG to push back my MG after I started Cellcept and have adjusted down Mestinon over time. I would consider myself very stable at this point and awaiting complete remission now.

Good luck!
TJ

I am on prednisone and Cellcept both.