I was diagnosed in 3/12 had a hard time chewing, swallowing and talking. Never thought that I would have to go to prednisone. In Nov. of 2012 I started on 60 mg of pred and then 150 imuran. Now I am down to 5mg every other day and 200 imuran. I gained 40 lbs, have had mood swings, swelling in legs/feet. Every once in a while trouble sleeping and a little bit of acne but I finally feel " normal" again.
It was worth it for me.

According to two neuros I have seen so far:
The prednisone is doing the "heavy lifting" by supressing my immune system a bit. The Imuran or Cellcept or cyclosporine will (after weeks or months) take over that duty, and I can taper off s l o w l y the horrible prednisone (in my case, diabetes is the major risk).

I began with Mestinon 60mg 3 X day - for 3 weeks before starting prednisone. It helped my speech a lot, but I considered Mestinon my "rescue inhaler"...that is, as the day wore on, and my speech got worse, popping Mestinon 60 would make my speech better in about 20 minutes. At one point, I was up to 90mg Mestinon, 4 or sometimes 5 times a day.

My speech "cleared up completely" only after 4 weeks on ever-increasing doses of prednisone. I consider myself to be swallowing and speaking 'normally' (or almost normally) for the last 7 weeks.

Basically, the immunosupressants reduce the acetylcholine-receptor-binding/blocking 'bad actors' from my immune system which prevent my muscles from responding to acetylcholine, while the Mestinon increases the amount of acetylcholine available to activate those receptors by inhibiting the natural acetylcholine destroying stuff - (acetylcholinesterase).
These are two different different things. I need both, apparently.

Everyone is different, but I suspect that most patients eventually get the best results by opting for both 'fixes' in some balance that works for them.

Best of luck. My dx was only 15 weeks ago. I'm very new to this myself.

When my disease was progressing, my Mestinon would very quickly become ineffective (and then effective again each time I stepped up the Prednisone). I had so much severe generalized weakness, with multiple crises, that avoiding immune supressents was never an option. Since I would be dead without them, I obvs found them to be worth it. I was on a high dose, of 60 per day, for about three months, and now, almost 2 years after beginning, I'm on 10 every other day, which is a pretty low dose. Everyone is different, but my side effects weren't too bad. Some heart burn, hair loss, cessation of menstrual cycle, slightly puffy face, some feeling hungry and just a little weight gain (after losing a bunch of weight because I couldn't chew), anxiety and indecision, rapid heart rate, and a bit of trouble falling asleep. These were all slight enough that i either found ways to deal (antacid pills, taking Benedryl to sleep) or just got used to them (the hair loss and puffy face). Those have subsided except for a bit of puffy face, and worse-than-normal pms, a bit of anxiety, and sometimes feeling uncontrollable hunger when I eat sugar.

The good news is, since your symptoms don't sound too severe, maybe your doctor can keep you on a low dose of prednisone, and maybe you'll see in improvement in a few months and will be able to get off of them. (Right? I know many of us on here were really sick, but some people get away with a low dose of steroids, don't they?) If your Mestinon is becoming less effective, your disease could be progressing and I'd say it is always easier to hold onto what health or strength you have than it is to regain it if you lose it. I hope you're feeling better soon.

I understand how frustrating it is not experiencing any relieve at all. Mestinon wont't be enough by itself when you have an over active immune system. It is time to attack the cause of the problem, and unfortunately it will take time to find the right treatment and the best dose amounts. As much as I dislike prednisone, it is the best first option treatment. You will go little by little to a high dose and the the tapering down process starts. I went down to 5mg from 60mg and have a monthly IVIG treatment. I am also taking Mestinon. I can now experience the relieve action of this medicine that I could not before. It has been almost 2 years after my diagnose and just now we are beginning to adjust the dose of the IVIG and Mestinon. I have to doubled it during the last month because I started having some swallowing and breathing problems again.
Ours is a very tricky condition to manage, especially when you endure a lot of stress which unfortunately is my current case.
Good luck!

I have been on predinsone for 4 years, stArted off at 60 and down to 20 off and on over the 4 years. I am now the lowest 15 as my dr wants me off. I have a luv hate relationship, as I know without it I would have been in big trouble. I gained weight which I hated, I believe it has weakened my bones thus causing a stress fracture 2 years ago. Would I take it again... Heck yes
This crazy disease for most of us requires more than mestinon. Do I like the side affects of the drugs, no, but they provide me with being able to function . Good luck. Annette