Hi everyone, i have never posted on a online community before but i thought i'd give it a try after reading some threads that offered encouragement and understanding based on personal experience of a relatively rare condition . I am still in the process of being diagnosed with MG even after a year of being on mestinon. I have the sero-negative type, we know that much. Now we (my new neurologist and I) are trying to figure out what flavor MG I have. (which receptor/muscle type is the most affected). I have widely generalized MG and have recently been hospitalized for a near myastenic crisis. I spent 5 days in IMCU with multiple stabilization's only to destabilize hours later. I was on a bi-pap machine and i got really lucky i wasn't intubated. I went home on Christmas Day only to find out that I was still so weak that my legs coundn't support me and crumbled underneath me when i would try and stand up. I have since learned that it was only my breathing that had been stablized; everything else was in shambles as far as strength goes. the hardest part was constantly being told i would go home when i would stabilize and then having the doctors retract that statement only a few hours and up to a day later.

I have a full time job and am self supporting. however, right now my job is evaluating wether or not i can come back from leave of absence b/c the weakness from MG has gotten so severe that it poses a liability risk if i am placed working by myself.

Now, my doctor is talking of putting me on Cellcept, and we have pretty much maxed out mestinon's effectiveness for me as this latest drug trial with mestinon is requiring pretty high doses to maintain a minimal level of functioning.

myasthenia can be a very frustrating disease with the way that you can be fine one hour and then so weak you can't hold your eyes open or head up the next minute.

Does any one out there know what it is like being on cellcept? Has anyone else had the exprience that i have with mestinon where the dosage must be significantly increased about every 3 to 6 months to mantain an aproximation of the previous level of functioning?

Ya'll have a great day,
Sincerely,
Bobcats (my college's mascot) rule

I also have generalized MG since last June and I'm under treatment since 4 and a half months: mestinon (2x60mg +2x180mg, started with 4x60mg but was not enough), prednisone (now 65mg/day, down from 75, started at 10) and Cellcept (2x2g from the beginning) and it's only now that something (probably prednisone) is working, my condition is slowly but consistenly improving.
You have to consider the onset of action of all these medications:
mestinon acts within an hour, corticoïds within 1 to 5 months and Cellcept could take more (1 to 12 months). It's like a multiple-stage rocket…each stage is used during a definite period and then discarded (or reduced in our case) but the stages are present from the beginning.
This is also necessary to minimize the side effects which could be serious in sone cases (corticoïds, for example).
Cellcept is known to have very few side effects but its efficiency is questioned by some.
Keep faith and hope
Maurice.

I am kinda afraid of prednisone and a little nervous about cellcept but your post helps aleviate some of those fears. My biggest fear is that i won't be able to keep a full time job b/c my body keeps on building resistance to the mestinon and so when that happens i get weaker and weaker till we boost the dose again. we have almost maxed out the dose that my doctor feels confortable prescribing. I just started having breathing problems. Do you know how to approach employers about the MG in a positive way? i am currently faced with doing this b/c i am trying to switch from my current physcially demanding job to an office job. I have also been strugling with depression b/c of the new limitations, any one have any suggestions on how to combat that?

Hey Bobcatsrule welcome to the forum.
I have just reached my 5th year of being diagnosed(if I say it quickly it doesnt sound so long) and am comming up for my 3rd month of being on cellcept. My neuro put me on it when I kept having relapses on azathioprine. So now Im waiting to see how the cellcept goes, so far so good. Im also on pred, am just now down to 20mg alternate days, and hoping one day to be not on it at all.
I to have struggled with depression, and am on anti depressants, as if Im not find it very hard to cope.
I use to be on 4 x 60mg mestinon and one timespan at night, am now taking 2 x 60mg daily, which is adequete for me at the moment, I up it to 3 if Im stressed, when the hot weather comes in etc etc.

so from what i'm hearing from you two saints who have given me hope. is that long term management of this disease is possible but it takes a combo of meds and I'm not the only one who has experienced the fun of mestinon insufficiently managing the disease long term by its self. It feels so awesome to know that I'm no longer alone in all of this. that is where a big part of the depression was coming in to play. before finding this community i had no outlet to discuss what i was thinking and feeling and had no way of using my knowledge to help others. i have done an incredible amount of research on this illness and the meds that treat it (i have always been interested in physiology and psychology). so i understand what is happening to me on a intellectual level but not on an emotional or practical level.

question: has anyone tried a combo of mestinon (while it is still working) and then adding cellcept during the initial phase of mestinon therapy?

i ask this b/c i have already gained a lot of weight since i came down with MG (before i was dx i thought i was just tired all the time and i ate to try to boost the energy levels. my neruo is hesitant to put me on pred but i'm wondering if cellcept and mestion alone might be enough to keep me a float on a long term basis?

Being here in France, I can't be of any help to you about employers…
About the pro and con's of various medications, you may consult:
http://www.neuro.wustl.edu/neuromusc...mgrx.html#pred
Maurice.

I think the drug queries you have can really only be answered by you and your neuro, as mg affects us all so differently, what works for one may not work for another. While one is on low pred another might be on high pred and another may be on none at all.
Since my last setback and increase in pred, I have put on heaps of weight, because the pred made me ravenous, and I'd never experienced this before, not even when I was first on it. I hope this helps some, but feel free to ask any questions you may have, Im happy to help!!
redtail

Haven't been on this forum for a while. You're right it's a great place. Like you, I'm working And like you, I've done a lot of research on this illness etc,. I work for a medical publisher so have access to some of the largest journals.

Like most of us, I just wanted to get my life back when I first got this. Since then, I have gotten my life with the caveat that I've also learned how to deal with MG, listen to my body and slow down when necessary. I was diagnosed in 2005 and have been on Mestinon and Cellcept together since May 2006. I think it's working.

I started with mestinon in Nov 05 and quickly saw some relief. Over time though, the results weren't as good as they had been. By the time of my surgery (due to thymoma), I was up to 60 mg/5x/day and it still wasn't working well. After surgery, we started 1000 mg Cellcept 2x/day along with the Mestinon. As others have said, it takes 6mos to a year for the Cellcept to really begin working. It took a little while but I'm now down to 60 mg Mestinon 3x/day. Surgery is supposed to help the symtoms too, but I think the Cellcept is doing its job (and no weight gain/depression as with Prednisone!). As my doc (Dr. Drachman) explained it, Mestinon acts like a bandaid only - that's why you often need more as time goes on. Cellcept actually stops the "bleeding". I'd suggest trying it and see how your body reacts.

Since you like doing research, you may want to register with Highwire Press(highwire.com). They're a large consolidator of journal articles. You can register free of charge to get e-alerts abstracts for articles with your preselected search terms (eg. myasthenia gravis cellcept etc). They're a great way of keeping up with the medical literature.

Let me know how it goes.

[/QUOTE]question: has anyone tried a combo of mestinon (while it is still working) and then adding cellcept during the initial phase of mestinon therapy?

i ask this b/c i have already gained a lot of weight since i came down with MG (before i was dx i thought i was just tired all the time and i ate to try to boost the energy levels. my neruo is hesitant to put me on pred but i'm wondering if cellcept and mestion alone might be enough to keep me a float on a long term basis?[/QUOTE]

Dear lminick, redtail, and neutro,

Ya'll are amazing!!! it brings me so much confort to know that i am finally NO LONGER ALONE in dealing with this. I wanted to type a quick update to this thread and let ya'll (an any one else who might be reading that with the right tools (eg: meds) and the right support network (friends on neurotalk and face to face interpersonal interactions) living a full life with MG is possible! Not only possible but confidence bulding. Right now I'm on a huge emotional high, dispite bad fatigue from working night shift last night. i am scrambling this morning trying to get certain things taken care of as my body does a huge jolting adjustment to night shift.

I look forward to getting a day shift job but my night shift job does pretty much rock! It was great to be back at work and all my co-workers (who by now all know about my hospitization and illness b/c they have seen me crumble before at work). They all rallied around me and just emotionally wrapped me up in bear hugs yesterday to welcome me back. It was almost like (on an emotional level) being a sports star and walking into a room of your most adoring fans. They love me at work and I love them, it is like a really cool family, that is why i have missed it soooooo much.

now that i am more stable on the meds, i am able to enjoy life and interacting with people again. one of the things that i would reccomend for ANYONE dealing with a chronic illness is let your mind and your body come to an agreement about the illness. I know that may not make sense but that was the most transformative statment i have ever heard (prior to comming to this fourm) and it came from an ER doctor.

It was my 3rd time back to the ER with complications since my release to the hospital and he spent about 20 mintues talking with me about how to beat the illness instead of letting the illness rule me. it was awesome b/c basicly what that statement means is, the medicine makes me sick, (which makes me tempted not to take it), but the illness makes me sicker, so you have to use logic and intelect to get your mind to cooperate with what your body needs, even if those needs seem to be counter-intutive in the short term. I hope this message of hope will encourage those out there who are struggling with MG and relapses and everything else to know that though it will NEVER be easy, it really can be done!

Thanks so much for all the support and encouragment, this site has been a huge part of my come back from the depths of depression to someone who is beginging to thrive in life again!


Well i think I'll go lay back down for a nap b/c i gots to work late tonight!

Hi,

My Myasthenia was pretty bad in 2006.. I tried Mestinon but it did not work very well and it tore up my stomach at high doses. I was put on Cellcept and I started to do much better at about 3 months. It has its side effects, but being able to move again was pretty nice. I am unable to take prednisone.... so I was happy the Cellcept worked.

Good Luck

Deb