Hi,
The steps in trying to figure out long term treatment is more of an experiment than a science much of the time as we try to figure out what works for us and what doesn't with no magic formula that fits each of us well.
Lets look at your meds; 360 Mestinon means 6 of the pills per day or spread out over 24 hours one every 4 hours. If you are spacing them out at that level, you probably are running pretty even on the dosage and not having any wearing off symptoms or restarting ones that could occur if you took them less often. For me, taking a pill every 4 hours kept me almost level. I didn't do that, but took more when I was going to be active (maybe every 2-3 hours) and then in the evening when I knew my breathing soon would be assisted by the CPAP, cut back. So I noticed clearly the difference. You might just skip one pill and go 6 or 8 hours gap and see if you noticed a difference. If not, it might be they are not useful and you could stop taking them. Some folks do not get benefit from them, but a long gap would be more likely to tell you -- and if you did have a problem you know that in 1/2 hour after taking a pill you will be back to normal.
The cutting back of two meds (prednisone and IVIG) at once is, in my mind, possibly a little more problematic. Adding Imuran as you do this is good, but the onset of Imuran helping is really variable with reports from 6 weeks to a year before it helps. Also you may have difficulties with it, so adding Imuran might be good a month or so before dropping back on the others.
Tapering prednisone from 20 per day starts putting you in the level where your suppressed adrenal glands need to begin to start again. And so dropping should be very slow. Many doctors have us switch from something like 20 per day first to 40 on alternate days and then taper on the alternate day routine. Supposedly this gives the adrenals more of a wakeup call -- the longer gap. Many folks aim for alternate day prednisone as their long term maintenance med. When I tapered it, I first went to alternate day double dose and then cut back some from that, with my neuro suggesting maybe I try cutting back a different way -- skipping two days and taking 20 every third day as I went lower. That worked for me and I actually got to every 4th then 5th... day and finally tapered off completely that way. I still had adrenal startup problems as shown by joint pain that took nearly a year after getting off prednisone to go away. However that kind of pain was treatable with pain killers so I knew it wasn't MG.
The good thing about IVIG, is that you can immediately switch back to the 3-day schedule if you start having problems and it is very fast usually to work. So holding that in reserve would be good.
I think the hardest thing for us to understand it how that everything we should do should be done very gradually and probably varying only one thing at a time. So with your 4 changes all happening at once, it will be hard to know which one is helping or causing problems. In my life as a scientist, we tried to do one variable at a time so it was less confusing. That is much slower than the shotgun approach, but gives some clarity to what is happening.
I always made my doctor explain to me exactly what she was doing when she changed my medications and only after this discussion did we actually agree on the next step. Sometimes I did let my own preferences override hers; for instance when I wanted higher doses of prednisone and wanted to stay on them longer than she thought I should. My explanation was acceptable to her, my wife has stage 4 cancer and a year ahead of harsh treatment and I don't want anything to interfere with my ability to be her caregiver, driver etc And so we agreed on that goal and more prednisone than she normally would have liked and that worked out great for my needs.

Of course, my advice is purely from what happened to me and my own narrow window into MG, so what I always say is make absolutely sure you express your concerns with your neuro, create common goals, and understand each other and figure out some kind of ongoing communication route for adjustments as needed rather than waiting for appointments. My neuro agreed to use the patient doctor electronic messaging system and I always got an answer in 24 hours or less. Of course I was very selective in my communications and didn't waste any time and unlike here, was very concise with my questions.

My neuro thought that a goal for me was to take Imuran long term, and have mestinon as my extra medication for flares. She thought the ideal amount of immune suppressant was just enough to get rid of my main symptoms with a little mestinon along the way. More immune system suppression she thought would be dangerous for me, so we agreed to aim for just a little ongoing mestinon as the measurement of how I was doing. I agreed that seemed OK.

Good Luck
Hope the changes go smoothly and you get a long term strategy
Russ

That was a good response although may I suggest that some of us can also experience a 'flare up' or whatever one chooses to call it, at some period in their journey? This usually requires rather more than a Mestinon boost, usually back to Prednisone / Prednislone for a short period. I've had one such incidence and since being diagnosed with Inflammatory Bowel Disease (IBD) I note that the incidence of a Flare-up is far higher than would seem the case with MG? I do think that those of us with MG get the better deal when it comes to treatment, but it's early days I guess.

Peter

Thanks Russ -

Thank you for your response. I will attempt to clarify.

Upon reading your response I realized that I neglected to list one important med that I am continuing to take: 180mg time release mestonin is also taken at 10pm every evening.

I have been taking 2 - 60mg of mestonin 3 times a dayfor the last few months. 2 at 7am, 2 at noon and 2 at 5pm. My Neuro is reducing the noon dosage from 2 pills to one. He is thinking that I might taking too much mestonin, so this reduction is an attempt to determine effectiveness, for me,

MY IVIGs routine will remain on the same schedule that I have been on for the last 4 months, 3 IVIGS, 3 concurrent days every other month.

So, Mestinon reducing by 60mg daily and the addition of Imuran.

The Imuran will probably not start for a few days as the VA is mailing this med to me.

So two changes: reducing mestinon by 60mg per day and the addition of Imuran.

We are also hoping for a long term strategy however, my body does not appear to be responding to the meds as others do. You mentioned above about you being able to take mestinon and get back to "normal". It is hard for us to determine the effectiveness of the Mestinon, as we do not see an improvement after taking mestinon or the IVIGs.

My MG was diagnosed after the AChR antibody test results followed by an EMG to verify muscle fatigue.

I am able to communicate with my neuro via PMs and usually get prompt responses. I meet with him every 3 months and he visits the infusion lab during my IVIGs.

I would love to get back to "normal". I think the old "normal" is gone and do not yet understand the new "normal".

Scott