Experiences with Cellcept
 

Hello all. Greetings from Canada. I have had MG since 1998 with Thymectomy '99, Radiation '99, Chemotherapy '99. Was good for a few years, and then Chermotherapy again in '06. We cannot get my symptoms under control with traditional methods anymore, and I have now started Cellcept.

I would love to hear from anyone who has been, or is on cellcept for myasthenia gravis. What I can expect, when, etc. We all know that you can read all the medical stuff you want, but it is in the personal experience of others that you gain the most insight and knowledge.

Thanking everyone in advance.

Hi, Littlekitten, just wanted to acknowledge your post, and welcome you. I've never taken Cellcept, so cannot give you any info on it. All I've ever taken for my MG has been Mestinon, which I cannot imagine being without, and one very disastrous trial of Dexamethasone, a corticosteroid, which put me into a myasthenic crisis. Is Cellcept the only medication they've tried you on? You mentioned the traditional methods don't work anymore, but traditional methods usually include Mestinon and steroids like Prednisone, as well as Cellcept. Have you ever been tried on those?
Hugs,

Hi and welcome! I take Cellcept along with mestinon and monthly IVIG. I'm not sure the Cellcept really does anything...the monthly IVIG seems to be the real lifesaver. The newest studies on Cellcept question whether it really helps long term with MG. I see my neuro next week and am going to discuss this with her. I'll report back!

Thanks Loisba and GaBelle1. It's going to be great to be a part of this group!!!

I started with the Mestinon when I was diagnosed in '98. Had the thymectomy in '99 and the symptoms got worse so they also put me on 50mg of Prednisone. Gained a massive 100+ lbs over the 2 years that I was on before they finally started to wean me. Lost the weight, and things were great for a few years. Even had a gym membership.

In '03 I ended up with the more severe symptoms again that the Mestinon couldn't control. Double vision, droopy eye, depth perception, slurred speech, chewing difficulties..etc. Was sent to a neuro specialist 3 hours away and he arranged for IVIG. A few treatments helped. Was ALMOST as good as the Tensilon :) Also put me on Imuran. But after 8 months I ended up with white blood count at 2 and extremely anemic (67). I thought I just wasn't getting over a flu! So they admitted me to the hospital and pumped me full of 3 units of whole blood and discontinued tbe Imuran. Thngs got good again for a couple of years.

Went through Chemo in summer of '06. No problems with the MG during that time. Then went back to work in December and everything fell apart. Ended up going on a leave in mid-Feb. Couldn't hardly see or see where I was going. And talking coherently just wasn't happening.

Currently taking 180 mg of Mestinon every 3 hours. Yes - an extreme amount I know. Timespan at night. I'm developing an iron stomach! Doing IVIG every month as well, but it doesn't have the relief of symptoms that it did when like the first few times I had it done. Symptoms now are as severe as I've ever had. Now the voice just doesn't work for more than 3 minutes, and I have choked on swallowing the Mestinon many times and had the water come out the nose. Ick. From a gym membership to not even being able to hold a full glass at times. And just always exhausted and winded doing the simpliest little things. Eghads!

So to try to resume a life - now the cellcept. Apparently the rumor is that people have had good results with it. It's just such a long wait until you start to notice results. And I'm not sure what kind of doses people are on. And if they combine it with corticosteriods as well. I've always taken Mestinon in some dosage from the time I was diagnosed.

Does that kind of fill in the missing blanks? I didn't really want to bore everybody will the long story. But that's kinda 'me' in a nutshell. I know I can be fixed again. Just like humpty dumpty....only with more glue :)

Thanks you all again,

Lydia

Littlekitten, here's a suggestion that might help you with the swallowing problems when taking your Mestinon. See if your doctor will prescribe the liquid Mestinon, not to take the place of the pills, but in addition to the pills. Then when it's time for your dosage, or a little before, put a little of the liquid Mestinon under your tongue. It will be absorbed sublingually, and may give you that little bit extra relief from fatigue that will allow you to take your Mestinon without choking on it.
I used this method the one and only time I had a (near) crisis. In the ICU, I would put a little of my liquid Mestinon under the tongue every time I felt my breathing totally going. I would do it several times in between the doses of regular Mestinon, and it kept me from having to be intubated. The crisis, by the way, was brought on by my neuro trying me on steroids. Didn't work for me!!! :D Do you think yours will start you on the Pred again? Sounds like it did work for you, weight gain aside.
Hope you get a handle on this thing!
Hugs,

Hi lttle kitten
 

Sorry that your having such a bad time.
I have no experiance with cellcept, so can't really help you with that.

I was just curious if maybe something else might be wrong with you. Maybe thats why the MG is getting out of hand.
Some times they won't look for other things, have you considered this ?
Even though I havn't been dx'ed with MG I did take mestinon in the beginning.
It really helped me out, but then I found that I was also gluten sensitve an I quite eatting that and wow I was able to stop the mestinon.

Just a thought, hope things settle down for you.
Take care, Patricia :)

I have been on cellcept for 2 1/2 years with great results. I have been able to taper down my prednisone dose from 100 mg/day to 10 mg/eod. I had previously been on Imuran but when I started to taper the prednisone I wound up in the hospital 3 times in 3 months for plasma-pheresis treatments. Since starting the cellcept I have not had to have plasma-pheresis or IVIG. It did take a couple months for it to kick in but for me it has been "the" drug that has helped the most.

Thanks, mamalori! That is exactly the kind of reply we need in order to build up our database of info. Good post, and it will probably help someone in making a decision about their treatment.

Hi Alberta, it's me Ontario!

How old were you at diagnosis? I was 15 when diagnosed, had thymectomy and was mestinon-dependent/remission for about 14 years. Went into relapse and then started prednisone, IVIg and CellCept.

I was on CC for 5 years but it hasn't been the wonder drug for me and I've actually stopped taking it (as per my own orders!). EVERYONE is different though. It usually takes about 18 months for CC to take any effect and you really have to be up to 2-3g daily to see any effect. This dosage information comes from Dr. Drachman at Johns Hopkins.

I'm currently at 15mg prednisone, 90g IVIg biweekly and 60mg Mestinon q2hrs. I, too, have developed anemia though my numbers are in the 100-105 range and not quite as low as yours. However, my normals used to be in the 130s so I do find the drop quite devastating. I'm actually going for a bone marrow aspiration tomorrow to find out what kind of red blood cells I'm producing. I also have kidney problems so who knows what's at play right now.

I just returned from the MGFA Annual conference in D.C. where CellCept was a hot topic. Have a look at their website for more information: www.myasthenia.org

FYI: Liquid Mestinon is only available to us Canadians through the Special Access Drug programme. I recently had to use it while hospitalized in Arizona and I have to say that I liked it much better than the pill form. Easier on the stomach and of course, easier to swallow.

I maintain a blog about IVIg in Canada: http://ivig.blogspot.com/

Good luck!
Jennifer