I have prescribed a three-day course of IVIg-less IVIg for myself, to be administered at home without the IVIg. In other words, I am confining myself to my bed and easy chair for three days, with only as much up-and-around as I could manage if I were pulling along an IV pole.

I am sure that the enforced rest of getting infusions isn't the only benefit I've received from real IVIg, but I think it may be a part of it. So.

I realize most people aren't in my happy position of being able to declare a three-day rest like this. I'm counting my blessings (and recruiting my children).

Abby

Sounds like a great idea. I think a few days of rest can do wonders to MG. As long as you don't use this improvement to fill up for those lost days.

Be sure to let us know how this works. It seems to me that sleep does more for me than IVIG or mestinon.
Mike

Yeah, there will be some catch-up to do...but I've timed this carefully. It's before school starts, and before my college-age kids leave for school. I will parcel out the chores. Anyway, this is an experiment. If it really helps, I will declare un-IVIg days in the future, too.

Abby

Mmmmmmmm...............REST!!!!! .....

Simply the most wonderful concept...........Ever!!!!!

It sounds like a good plan anyway. I can't wait to hear how it turns out! I think that it would be nice to declare a 3 day holiday.

Well, I sure am disappointed in the results of my three-day rest. I'm worse than ever. Of course you never know--maybe if I hadn't rested, I'd be much weaker than I am right now. Anyway, I seem to be back to where I was before I started getting better in May.

Phooey. Well, it was worth a try.

Abby

Sorry to hear this but at least you tried. I am going through the same thing, trying different things. For example I have stopped my 12 hr time release Mestinon at night. What happened was I ran out and didn't get refill for 3 days so I have just continued not taking it (now 6 days) and I see no difference. I am going to cut back on my 60mg I take during the day to see what happens. I have been saying for some time that the Mestinon was doing nothing for me. I have 4 more IVIG treatments and am going to talk to my neuro about stopping those also since I see no results from them.
Hang in there we will get answers one day.
Mike

Mike, I'm a fan of your approach: let's try everything. What strikes me is that everything you've tried, you've given a really substantial trial to...all that IVIg, and all those months on Imuran even though it was making you sick...

I don't take Mestinon either. Every once in a while I thought it was helping, but mostly not, and if I take it every day, I get a chronic pain in the muscles around my eyes.

I think the most hopeful treatment for MG is persistence. Hang in there. I wish they'd try you on plasmapheresis next, only because I've read that it helps some people who don't respond to IVIg.

Abby

I am sad that your test didn't work. It seems like such a good idea.