Mestinon is really an "as needed" type of drug rather than a 4x a day drug, as the need for it comes and goes as our activity levels change and as our daily functionality changes. Doctors think we are too dumb to use it that way and so they say X times a day or every so many hours... My neuro said take it as needed up to a maximum of XXX per day and trusted me to figure out my need. Some days I took a lot and other days very little.

Prednisone should gradually take away symptoms of MG and at a high dose, should completely get rid of symptoms (60 mg per day for me) and then Mestinon is not really needed for some of us.

Then, as prednisone at high levels is not good for us, we try to taper it down to the lowest level that works. When we get as low as we can, the goal changes, and we try for the lowest level of prednisone that with mestinon, we can keep our symptoms under control.

The "with mestinon" part is because prednisone at any level is somewhat of a problem, so if we take mestinon along with it, we can lower the prednisone level more.

Generally a neuro will be OK with prednisone at 10 mg or less long term unless we have too many side effects. My neuro thought I could tolerate 10-15 mg prednisone long term, but preferred, once prednisone got me under control, that I take less and add mestinon (which I had quit taking when prednisone worked). I had high BP, blood sugar, and a few other prednisone problems. She thought I might be better of to transition to another drug other than prednisone for long term. Prednisone was to get me somewhat functional quickly -- it did.

I was on of 15% who go into remissions of varying lengths (3 years now), but had decided to switch to Imuran long term had remission not happened. When MG returns, I will again knock it down with Mestinon and prednisone, and then do the switch (of course I am hoping it won't return at all) to see if that works. No treatment is without problems.

Mestinon has some rough immediate side effects, but no real long term ones, prednisone is the opposite.

Good Luck
Russ

My own feeling is that whatever gets you where you want/need to be is what you take med wise.prednisone does have longterm bad side effects at high doses (I was told over 20 mg daily). Mestinon has no long-term effects that I'm aware of. If you're at the start of the MG journey, try what gets you where you need to be strength wise and mentally fit. Hope it's a good weekend.

Thanks to both of you. Happy to know I have some control over the medication. My neuro mentioned Cellcept after going off the Prednisone, but again have to see how I do and like I said, he said if I am fine on 30 mg, make due with that.

This has been the worst almost 6 months of my life and I have gone through some rough stuff. Just feeling the tiniest bit better after a week on the Prednisone, I feel so much better mentally. I was very active and I think I may start going to some aqua classes for exercise and walk. I don't know how my balance would be on my bike yet (need to get an adult tricycle) and I haven't played tennis in six months. I am sure my game has gone to heck in a hand basket!!!

To Russ and Xmas: You both are so knowledgeable about all of this and you have truly helped me. I am wondering Russ, you have been in remission for 3 years. Can you function like you did before you had this happen to you? Also while on the Prednisone, do you hopefully reach a point where you feel back to normal (for lack of a better term) and then go from there?

I will ditto rhanson, the blood sugar effects of prednisone and the BP problems, as well as the moon face and hump on my back lean me to taking more Mestinon and less prednisone. However, I am one of the lucky ones that Mestinon actually improved my bowel habits and I have less diarrhea with it than without. We're all different.

How long did you take the Prednisone and at what strength? How long before you noticed the side-effects. I am going on week 3 and will increase to 30 mg and hopefully can stay at that dosage. I, so far, feel okay, just an increase in appetite. I do feel somewhat better, but from what I have read here, I think I would rather try and take less of Prednisone, hopefully no more than 30 mg a day and take the Mestinon 3-4 times a day. This is still touch and go for me. Although I feel a bit better, I am no where near to how I felt before all this started to happen and may never feel that way again??

I have never gotten to remission or even 1/2 back to old me. But alot of other medical and family stuff is a big factor. I'm in my 60s and don't know want a factor that plays. It seems sometimes the younger get sicker very fast and some recover quicker than us old farts. I had double vision at start for short time periods (several hours) then got weaker but blamed it on age etc.just relax and learn your own paces etc. Have a good day ,hope it's sunny for all

I will turn 70 next month and from what I have read, it usually strikes in younger women and older men, so I really don't fit the profile. No family history of it either. I can function better now after being on the prednisone for almost two weeks and still taking the Mestinon, but still can feel the limitations. I also had a sudden onset of double vision that last for about 5-7 days and then went tapered off and went away. Sometimes my balance feels iffy and I get a bit lightheaded after taking the meds, but that diminishes. I get a bit befuddled in my train of thought too at times.

I guess all I can do is wait and see how I react to the prednisone and Mestinon. At first the Mestinon was enough, but then that started to have less affect. Now with the prednisone it is a bit better.