Joe,
We all have MG or are afraid we have MG and I think we all know that it is nothing to mess around with. MG can be so mild that at times we can appear to have nothing wrong with us, and it can be life threatening and the medications we use to control it can lead to life threatening conditions like bleeding ulcers, adrenal failure, etc. It can be so mild for a time that one can walk around (rarely run around) undiagnosed or be an almost constant threat.

Spontaneous remission occured before there was any treatment, but death was much more common. People who have only ocular myasthenia for three years are not likely to progress to generalized myasthenia, but even that is no promise. There are treatments for MG, but although it is probably meant to be comforting, statements like "with treatment, one can expect to live a normal life" really require explanatory clauses. One I did see was "eat by mouth." Sheeesh! It seems to mean "an average life expectancy, mostly out of the hospital." Not a life a lot of us would consider normal and certainly not what we were capable of doing before.

We don't know what is going to happen or whether or not our drugs will control it, but most likely they will. Whether we will be OUR normal is totally unknown, but almost certainly we will be well enough that most of us will be able to enjoy most days, although it may take unusual efforts both medically and psychologically. Research is ongoing and picking up; optimism is called for, both because it seems to help our condition and because the prospects are certainly better every year for more specific drugs, better treatment, spontaneous or medically induced remission, more functional days. I do not look at treatment as acceptance of my present condition, but as buying time. We can try not to be frightened, but MG is a condition to be reckoned with: (quoting Curt)

"Much of fighting MG is having personal determination, not to allow the very real and powerful destructive forces of this disease to take our souls and lay us down."

This and another quote is at the top of the Links Group first page. b. ...

Writers should not call the 15% spontaneous remission common, and we have seen MG come back here on this forum! There is a special place in hell waiting for those who wrote or proliferated the bit about near normal lives. Oh, brother.

I started cellcept yesterday evening, and it makes me really nauseated. The pharmacist told me it MUST be taken the same times every day, and on an empty stomach. One hour before food and two hours after. I'm a grazer, so an empty stomach is not a normal thing for me. Do any of you take yours with food? This morning I took it at 6:30, and it made me feel queasy all over again. Does your body get used to it and symptoms pass?

Yes, I tried both ways. I could not tolerate cellcept but due to my ulcer, my neuro didn't make me suffer through for long.

Cellcept with food just decreases some of the absorption. I'm sure the long time users have more helpful information for you.

Will your neuro offer anything to help you through the nausea?

Could you switch to Imuran since it is early in treatment plan?

Imuran for many also causes some initial nausea. It seems for most this fades in a week or so. I've been taking it for about 4 years now and it rarely bothers me. With Imuran you take it with food.

I would just give the cellcept a chance, I think any of these medications that are making a change to our immune systems are likely to have a few initial side effects.

Good luck Erica

Joe

Thank you guys! Today I worked out a whole pill taking schedule with my doctor because it is interfering with my sanity. I take 20 pills regularly each day and some are to be taken with food, and some not. I feel like I should be 95 years old instead of 35.

Wow Erica, 20 pills is a lot to take in one day or so I thought and then I counted my pills.... I have 23. Those are just my regular meds and does not include my imitrex for migraines, loratidine for allergies, and alprazolam for anxiety.

I have been on the cellcept since February and at first it did give me some trouble with nausea. I had to start eating something small before hand like crackers to avoid it. Now that I've been on it for a while it doesn't happen as much. When it does I just eat something small to calm my stomach. I take mine at 9:30 am with my second dose of mestinon and my second dose is right before bed. I never have a problem with my second dose though because I sleep through it. A couple of crackers is all I need to take the nausea away though and I try to hold off for as long as I can before I eat them to give the medicine as long as possible to be absorbed. Sometimes something acidic can help too, like lemons. I used to take chopped lemons to work with me for those times. It was a trick that I learned when we went to Australia and ventured out to the great barrier reef. I was so sea sick that I couldn't even stand up to see any of the reef. Then the crew served up some lemons and poof, it was all better. I have a very sensitive stomach and I get motion sick very easily. I had the patches on behind my ears, the wrist bands and two different types of anti-emetics. Nothing else worked but the lemons did. That might not be practical for everyone at work but maybe in a more informal setting it could be useful. I hope this helps. Please let us know if you are adjusting to the cellcept.

Love, hugs and aloha to you!
Angie

I take my CellCept with or without food. I would suspect it is absorbed slower with food. I'll have to ask my Neuro if it is OK.

That was some great info Joe.

Like Russ said a while back - it is a trade-off: MG symptoms (or lack of) for the side-effects of the immunosuppressants.

The antibodies keep working on us and once the bulbar functions are hindered, IMO adding the suppressants makes sense before it gets worse.

To a degree that is true about side effects, if they do not become incompatible with health or life, but there are choices. I vaguely remember reading (and someone with better eyes may go a-googling) that there was no difference in effectiveness of CellCept and Imuran, which have me a headache for the first few days but has otherwise offered no appreciable side effects. Because these therapies take a while to work, if you feel a drug will not work for you, it is better to change the game plan sooner than later, but that is just my opinion.

Thank you I decided to stay with the Cellcept. I feel little bit nauseated but not that bad, and hopefully it'll pass as I get used to the medicine. My neurologist said 9-12 months for improvement on either Cellcept or Imuran, but Angie felt improvement in 3! :)

I take a lot of pills too. When the MG was hitting me hard, it seemed like that was all I could do - no food, just pills. I didn't like crackers because pieces would get stuck between the tongue and roof of mouth for a day or so.. Ahhhhh.... I could chew a Tums though. Tums and pills, that is what it seemed I was eating before the IVIG.

I felt incremental improvement and think that some of my MG symptoms may finally be abating at 9 months into immunosuppressant treatment, though hard to say. I have too many other things going on.

Thank God, Elinora! You deserve a break. I hope you find out soon what is going on other than MG. it's a wonderful thing you were so healthy and fit before all of these challenges! It must be doing me some good, too, though its hard to imagine "what ifs". I'm trying to start living in my present reality rather than wishing for my old self back. It's not working well, but the process is underway.

The crazy thing is that I had all of the symptoms of MG since I was pregnant with my 9 year old. I am just a driven nut, but I am glad I got my health in order before I got hit with this bus. I am probably incapable of not trying to get my former level of fitness back, but I cannot give up. Your way is probably more correct. I am probably in for another big diagnostic limbo, which I have surprisingly accepted. I guess I am not as incorrigible as I thought. ;-)