IVIG disappointment
 

I finished three days of IVIG a week ago. I felt immediately stronger. Before the IVIG, I was collapsing many times a day. My last collapse was the first day of the infusions, and for almost a week I had only mild symptoms.

But starting last night, all my symptoms have come back. I'm on the floor again. I don't know what to think. The last time I had IVIG, in August, I got six weeks with only very mild symptoms. That was a five-day course. My best guess is that three days I had this time simply wasn't enough. Is there anything else I should be considering?

Abby

I normally get 5 treatments over 3 weeks but I just had some kind of infection (minor) and I have switched from Imuran to Cellcept and Prednisone. The infection knocked me on my butt (very weak) so my Dr just scheduled me 2 IVIG treatments a week for 4 weeks (8 infusions). My last IVIG was in Nov. It appears to me I need IVIG about every 6-8 weeks but my Dr hasn't said that.
Mike

I almost never get viruses (maybe that's the flip side of being prone to auto-immune diseases) even now that I've been on Imuran for nine months. But a few weeks ago, I got a cold that was going around. It wasn't even a fever, just a cold with a sore throat. I was really surprised by how much worse it made my MG symptoms! I wonder if the reason is that the immune system goes into hyper-drive to fight off a virus, and that makes auto-immune diseases worse. Just speculating. But it was remarkable how my MG got much worse just before I got the cold, and got much better as soon as I was over it.

I still have some hope that we can find an IVIG schedule for me that will keep me relatively steady, but today I am discouraged. It's going to be a longer road than I'd hoped.

Abby

Abby, I wasn't able to tolerate IVIG -- but, EVERY illness -- viral or bacterial -- sends me into an MG exacerbation -- usually 3 months long. I'm hoping that WITH you being on Imuran and IVIG that YOUR exacerbation won't last as long.

When we get sick, our bodies produce antibodies -- ALL kinds of antibodies, including MG -- we are non-discriminatory. :D So, the good-ole MG "factory" is in full-production mode due to your cold. You are just gonna have to wait until your factory decides to "lay off" workers. ;)

And, you are right -- my MG is worse about ONE day BEFORE I know I am sick with a cold, the flu, a stomach virus, or other illness. The antibodies are in production, I think, BEFORE the viral/bacterial symptoms appear. And, then, I will feel better, MG-wise, for a couple of days AFTER I get over my illness -- and then, take a SHARP plunge as the antibodies seem to go into overdrive. It is a STRANGE disorder to live with. I get sick a couple of times each year -- even though I carry anti-bacterial wipes EVERYWHERE I go and wash my hands like an obsessive compulsive. :confused:

Abby, IVIG is a weird thing. Everyone responds differently to it and every batch is different. I get it for two days every other week. I don't always respond the same to it. I never get some surge of energy anymore, though I did at first. Now it just maintains me and if I miss I'm in the ER.

It can take up to a month to work. It can take several courses to work. When I first started it for small fiber neuropathy it took four months to work, though I know that should not be the case for MG. I believe people should get it for several courses , not just once, to achieve maximal results...I was sent for it for ongoing treatment off the bat, not just one or two rounds.