Sorry things are going slower than you had hoped.
I took prednisone for about 4-5 months before the MG problems mostly went away. My dose was 20mg for a few weeks , then 30, 40 and finally 60 for a month before my double vision and breathing problems went away. I used a lot of mestinon when I wanted to be active (it didn't help the double vision). I took about 60 mg every 4 hours, sometimes more and sometimes 20mg every 2 hours.
My neuro told me I should be patient and it would work. It was hard to be patient, but I made it, and it was really good to have the MG symptoms gone and be tapering down prednisone -- at the high doses it was hard to sleep and I had other side effects that were much better at low doses of 20 or so.
I was one of the 15% who go into remission for varying times. I have been for 4.5 years now.
Good Luck
Russ

By the way, I did get worse for about a month or so before I began to notice I was gradually improving. I think it was that prednisone was slow to work and so MG kept progressing for awhile.

Hi Greco, hope you had a good Christmas and the new year brings you better health. I think you may be having a flare of some sort. I was on 360mg of Mestinon a day for almost a year now and I have cut it down to 240 for two months and now I am down to 120 a day. I take it every 6 hours. I am still feeling good, but not as good as I use to. My cramping is about one quarter of what it was and I am sure when I see the doctor, he will increase my prednisone. I am still on 2000mg of celcept twice daily and I am hoping to get that down next. I see at least another 6 months or so of celcept. I hope you can get the neuro to keep adjusting the meds for you as each of us is different, the disease and the meds are different for each of us and you just have to keep trying combinations. Hang in there

Thanks guys. You are always there to help me out. I had kind of a rough day today, but now this evening, I don't feel all that bad, but not great! I took 50 mg of prednisone today and will do 40 tomorrow. I have taken 2 Mestinon today. The mornings seem to start off slow. I need to take a Mestinon around 7 to get a jump start.

I hope you have a Happy New Year and we can get through this.

Is MG something than progress like MS or Lou Gehrig's disease? I haven't really read up on it to that extent.

I did go to one site and it had a list of things that can trigger it and it is just about everything; no heat, no gold, no stress, eat right, stay rested, it covered a plethora of things. Sheesh, what a full time job this is, when you are having problems with it.

I also find that the way I have been feeling these past couple of months is different than when I first started to notice this. I am keeping my fingers crossed, that I don't get any double vision or problems swallowing too much. Funny think I go to sneeze and I can't. What's up with that? Again, a full time job.

Hi Grecogirl,
Sorry you are not feeling well, I agree with the others that it does take at least 4 months of treatment to start to feel better. I’m at 1 year now and feel a lot better. So yeah try to wait it out best you can and rest .
Hope this new year brings you better heath !

Thanks Lynn. The thing is I suffered for 4 months 2 years ago with weakness and then went on Mestinon and prednisone and I felt great in about a month or so and had a very good year. I got down to 2.5 mg of Prednisone and no Mestinon and went off the prednisone altogether and in 5 weeks, had a terrible bout of double vision that lasted a month. I started back on the prednisone and upped it to 40 mg a day and it finally went away, but never had weakness. Had what seemed like a full recovery and then about almost 3 months ago, down to 5 mg prednisone alternating with 2.5, starting to feel different and it has been a battle ever since. No DV, but my eyes are kind of funky at times. So I am back on 40 mg of Prednisone a day alternating with 50 and Mestinon. This has been going on for more than 2 weeks and I will give it a month before I go back to the neuro.

I know I need to wait this out, just hoping I can get back to at least half of where I was before.

Happy New Year Everyone!

Oh I see.. that’s very frustrating :(
I may be naive then , I only have MG for a year. I am on imuran and maybe that is what’s holding me together.
I also had a thymoma and thymectomy .
Are you on any immune suppressant ?

Happy New Year to you Greco, Lynn and all. MG is not necessarily a progressive disease, as a matter of fact in many cases it can go into remission and not be an issue for long periods of time. But one thing I am finding out is that you have to try different combinations of meds to see what works for you. I also think the neuro's should do blood tests more often to see what is happening as we move up and down on certain meds. Lately I have been doing well, just a year out of the hospital and being diagnosed in Sept 2016. During 2017 I felt I was up and down alot, but knew in the long run, I was getting better. Today, I am having some vision issues and I am assuming that it is MG related. I will know soon enough as I will continue to get worse if it is. Just give it some time for the changes in meds to work, and keep track of how you feel with different med rates. Hope you the best.

Hi
I have never been on prednisone and hope to never be. I have had very good results with Plasmapheresis. Although it is a very time consuming treatment - I prefer it to the immunosuppressants because of their side effects. I also find what seems to help is a very clean diet and managing my stress.

Hey Dawn, glad you are having good results. I had Plasmapherisis 38 times in 5 months and I had good results but they started to taper off. During the following 10 months I have been improving with prednisone, mestinon and celcept. I think the biggest thing is finding what works for you and managing stress. The stress is the biggest part.

Last year at this time my neuro wanted me to on Cellcept and I tried it, but stopped as I was doing okay on a low dose of prednisone after having a flare of double vision around October.

So what is your dosage of the prednisone and the Cellcept and Mestinon. Do you feel all 3 are what is needed for you to maintain what level. Would you consider yourself w/o symptoms, mild symptoms, etc.

I had no symptoms and was down to 2.5 and no Mestinon and went off of it and got the DV. Went back up to 40, DV went away, no weakness, and got down to 2.5/5.0 and then about 3 months ago, started with this weakness, light headness, off balance, unable to play tennis and now up to 40/50 mg of Prednisone and 2-3 Mestinon a day. I am out walking an hour a day and doing okay. I don't feel like I am going to fall down.

So when I go see the neuro in another 10 days or so, should I approach the idea of Cellcept again and take it with the Prednisone. He says there are some serious side effects with the liver and you have to have blood work once a month, that is what I didn't like and the prednisone alone was working.

I am so afraid of getting on the medication merry go round and not knowing what is actually working or not or developing more problems with it.

I was diagnosed in June of 2016. Did well with Prednisone for one year. Was off of it. Then I overworked and had a flare up. Now I am back on Prednisone started at 40mg and going down to 5mg. I take cell cept 100mg a day and four mestynon. When I look up slightly my vision is good. When I look down it is dv. It gets worse as the day goes on. I realize from reading all the posts that I must control my stress and not get overtired.
Any thoughts out there? Please let me know.

Judgedan, that celcept is a very low dose. I have been on 4000 mg a day. Celcept takes a while to get into your system but once I hit the 2000mg twice a day, I sure felt better. Just sayin