I have had MG since March 2007. The 1st neurologist didn't have a chance
since I was angry with the fact that I had MG. After trying mestinon,
prednisone and azathioprine over a 3 week span, I advised the neurologist that I was tired of being a guinea pig, and I was not going to try anything
else. He advised me that he no longer wanted to be my doctor. Of course I was my worst enemy at this time. I stopped taking anything, and went into crises and spent 2 weeks on a ventilator, ane another week in the hospital.

I learned to accept the fact that I had MG, thus the 2nd neurologist had a better chance. We settled on mestinon (30 mg 2x daily) and prednisone
(20 mg daily) All went well for about 2 years.

At that time he stopped being able to practice at the hospital.

I went to a 3rd neorologist. She tried stopping prednisone, and go to
azathioprine. I discovered that she didn't have hospital priviledged.
I never tried her suggestion.

The 4th neurologist started out good. He sent me to Shands at the
University of Florida. They only confirmed that I had Mg. Since then (2years)
everything well with only 5mg prednisone every other day and 30mg
mestinon 3 x daily. 3 months ago I started having weakness in chewing and
neck muscles.

At that time he upped the prednisone to 20 mg 3 x daily along with mestinon
60 mg 3 x daily, and started me on cellcept generic 250 mg 2 times daily.
After 2 weeks, he increased to 500 mg 2 x daily.

He advised me that I would probably develop osteprosis. He has indicated that it will be his way only. I want to be able have some input, however due
to the 1st bad experience, I don't want to have another crisis.

The way I understand cellcept is that it suppresses your imune system, thus
making you secceptable to infections and many other side effects.

As I read many posts on this site, I see that it can take up to 6 months for
cellcept to work. Has anyone noticed a great Improvement anywhere up to
the 6 month time, or has anything gotten worse?

xrpodn- i know you what you mean about the accepting the fact of MG..thats probably the hardest part of all of it...except going into crisis for the reprieve.

Your history of neurologists is quite impressive to say the least...I wish you would have gotten a more experienced neuro. maybe a specialist, have you tried that?

I had a few crisis earlier last year due a worsening of my MG after the thymectomy...sometimes that happens I guess. I was on (and have been) prednisone 60mg a day for a year and a half and that wasnt helping as I was so weak.

At Unc/duke i tried cellcept, and then when I transferred to Hopkins, they switched me to Imuran and that is working much better. I dont understand i guess, did you try azathioprine, or refuse to? It works for me much better or is showing much more hope than cellcept. I do IVIG monthly as well as prednisone and imuran to keep stable.


Cellcept sucked- point blank. The side affects started immediatly and i was told to deal with them for the 6-7 months it would take to work. Headaches, stomach pains, infections, etc. The infections was the worst part. I think cellcept makes you more prone to infection than imuran...or atleast that is what it did to me... i got everything...it sucked. Actually that may be a lie, at college, when on imuran I got pneumonia, menigitis, common cold, ear infections all the time...hardly went a weak without one of those things, hense I took a medical leave of absence.

Not sure what to tell you on th cellcept side of things...but it did not work for me and was much more expensive that imuran..


if you have any questions let me kno

Tyson, are you better now from the thymectomy? Do you think it was a good choice? How long did you get worse for?

Tracy- I dont think it helped, sadly. I was worse for about 4-5 months, and didnt think there was going to be an end to it. I think it was a good choice, as I had a tumor on my thymus therefor requiring it to come out. Possibly in the future I will feel the effects of it. I am currently still on IVIG, prednisone, and imuran. I wish I could get off the prednisone and IVIG, yet i dont think its going ot happen.

I am applying for a stem cell treatment in Chicago, i hope i do get in.


Good luck with your decision.

Hi,

I am having a little trouble with my eyes today--but wanted to share with you my experience with Cellcept--which I consider to be good! I was diagnosed with MG about a year ago. I have MuSk Positive MG which is very hard to treat and a rare form. I have been taking Prednisone 30 mg/d for a long time, Mestinon 60 mg/3xday and I started Cellcept last Nov. 2010. I really resisted taking either Cellcept or Imuran and new symptoms were popping up every 3-4 weeks such as my neck muscles weakening and having trouble holding my head up. Increasing the prednisone didn't help and my fear of cancer had to compete with taking either the Cellcept or Imuran. My Neuro explained that Cellcept took longer to kick in and help--could be a full year where Imuran worked more quickly. But cancer, while still possible, seemed to happen less on Cellcept--so we put me on Cellcept. I started out taking 1000 mg a day (500 mg in am and again at night). In Jan 2011 I got a bad case of double vision when the temp. went down to 7 deg. below zero and my Neuro increased my prednisone to double strength for 4 days which took care of the problem. He also increased my Cellcept to 2000 mg (1000 mg in the am and then again at night). I've had very little side effects from it. Briefly I had a little stomach upset--not bad at all and I found if I drank a lot of water before the pills, with the pills and after it resolved that issue. Go figure. Also, I'm not really a coffee drinker and about that time I was drinking a copy of coffee a day... I am convinced the Cellcept is helping me. But I still deal with symptoms of MG but they are much milder. I started out with bulbar symptoms and that is so far all that I have (neck up symptoms). I had slurring that had me sounding like Daffy Duck (no longer), choking and swallowing issues (still that will pop up, droopy eyes (still have that but it's not too bad), weak voice sometimes (still). My Neuro says I have to have 3 months of no symptoms before we try to reduce my prednisone. But there's no doubt in my mind the Cellcept is helping me and leaves me feeling as "normal" as one can with MG. Remember--we are all different. This is just my experience. Somebody else could have a terrible experience with Cellcept and I know of many who have gone into remission on Cellcept--more than once even. I have posted a history of my medical experience since MG on this blog--maybe last May??? if you're interested....

I wish you the best!

Grace

I just joined this site so I could talk to you. Never posted on a blog before.
You mentioned Shands in Gainesville. I live in Orange Park near Jacksonville and am being treated at the Mayo clinic. I tried to join the Jax MGFA support group but never got a reply to my emails. They must be inactive. My MG has really acted up this week end and my sleep schedule is all out of whack so I started surfing to see what I could find. It's nice to meet someone closer to home.

I have MuSK antibody MG. I also had problems with my first neurologist. It was more his office than him. My tensilon tests were negative so they didn't call me back in and the MG generalized. He got mad that I didn't see him right after the test but I told him his assistant told me to go home since the test was negative. I got worse, went back, and he said it had spread too far and he couldn't help me any more. That was over a year ago. Bottom line is I'm going to Mayo now, but this is a wierd disease isn't it? You never have a "good" day. It's just that some days are less worse than others. Sorry to be negative.

About the celcept. I don't know what that is. I'm on prednisone and azathioprine and get IVIG every two weeks. My neuro says it will take 6 months to a year for the azathio. to kick in. Sounds similar to your celcept. I've written too much and will sign off and see if this entry takes. Good luck to you and God bless.

I posted something similar to this in another CellCept thread.

I have been on 1500 mg a day of CellCept for 2 years. Being on it has helped me to decrease the Mestinon. I used to take 60 mg 4 to 5 times a day. I now take 30 mg twice a day.

I had a thymectomy in August 2008, started CellCept in July 2009.

While taking it my weak leg muscles feel better. I have however developed plantar fascitis. My eye no longer droops, although my neuro says CellCept does not help occular MG. I don't get out of breath as easily.

I have only been sick once while on CC. I had viral pharyngitis this winter and was in bad shape, ER, etc. We decreased the CC and went on Prednisone. I finally got better after 3 months of this.

I am a teacher and have been taking it easy all summer. Our plans are to completely go off Mestinon, continue CellCept and take a small amount of Prednisone every other day when I go back to work. My school is not air conditioned and it has been near 100 degrees all of July.

When I finally got a neurologist who seem to listen to me, I hooked up with a Neurology clinic. I have been on Mestinon since 1996 and so far it hasn't helped me but could be keeping symptoms from being worse. At the clinic they put me on cellcept and steroids. It took about 6 months to see some improvement and after a year my double vision was gone and my muscles were stronger. after 2 years I started getting mild psychotic symptoms.... then after a couple of months I started getting paroniod, ended up at a hospital and once out things got worse because they couldn't take me off steroids. It got so bad I took myself off cold turkey, after about 3 months the symptoms of MG came back with just taking cellcept.
I was taken off cellcept after 6 months because it wasn't effective without steroids, and the steroids put me into a mental illness like state.
hope none of you experience it, because it was the worst thing in my life. do you know the feeling just as someone scares you and you are about to scream? that is what I felt like all day and everyday.


hope this helps

randy