IVIg without the IVIg
 

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!!!!! .....:Zzzz::Zzzz::Zzzz:

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.