How can you tell if IVIG infusion is working for you

A few years ago, when I had my first set of IVIG infusions, I didn't know what to expect and still don't. I had expected improvement that would 'jump out at you'. However, it didn't happen for me. Maybe I was expecting too much or maybe I was one of the many that just doesn't respond to it. After a couple of weeks, I'd be admitted to the hospital for 5 rounds of plasmapheresis. Because IVIG infusion left me with migraines, I gave up on them after the 3rd set of infusions and just went straight to plasmapheresis. Was I expecting too much? Would you give it another shot if you were me? What kind of improvement should I see or what kind of improvement do you see? Does it slow down your attack or exaserbation? You see, I could have been looking for too much. Because my episodes wax and wane, I would have the iVIG infusion at the beginning of the exaserbation, however, the episodes usually wouldn't die down for another 4 to 6 weeks, which by that time, I'm using a walker again. Thanks in advance for any comments.

I wasn't expecting anything, but the one thing I did notice was that I didn't lose my balance as much which means I didn't fall as often (which now is six months). I know there’s a war (of sort) going on in my body and I have to sleep as much as possible, which also means I'm not taking in the nutrition I should,so who wins? No one at this point, but I'm still hoping for a remission.



springmang said:

I wasn't expecting anything, but the one thing I did notice was that I didn't lose my balance as much which means I didn't fall as often (which now is six months). I know there’s a war (of sort) going on in my body and I have to sleep as much as possible, which also means I'm not taking in the nutrition I should,so who wins? No one at this point, but I'm still hoping for a remission.

Thank you soooo much. You've shown me that I was expecting way too much and I may have called it quits on IVIG infusion to soon. Are you taking prednisone or Imuran along with this or does IVIG infusion work for you by itself. I ask that because I hate those two drugs as a long term partial solution.

I'm taking prednisone daily, but to tell you the truth I'm not sure if that's doing anything. I try to keep a routine but it's hard, I fall asleep after supper then wake up at 10:30-11:00pm then go to bed, watch the news, (or whats left of it) and then sleep until 6:00am, then I'm on my computer for a while, then nap time kind of sneaks up on me around 11:00am. Gary

Thank you so very much Gary. Prior to discovering this site, I had no way to compare experiences. My experience is so similar, and in so many ways, to what you guys have had. And after 3 and a half years, I've stored up a lot of questions. Everyone's treatment is a little different, but the experiences with the treatments are so similar. It really validates just soooo much. It's real life experiences that my research was missing so bad. I've learned more here in a couple of days than I have in the last year. And this information is really more valuable to me at this stage of the game. Thanks again soooo much. I really hope other people chime in on their treatments. I'm having an exacerbation now and will likely have to go in to the hospital real soon. My doctors rely on my input regarding treatment since it's like throwing mud at the wall and seeing what sticks.

I went from being practically bed-ridden in 2007 to mowing the grass (little yard) but I am able to do it. The IVIG treatment is not a miracle cure, nor is there a cure for this disease. I went off IVIG last December because my viens were bad. I now take Hizentra Sub-q once a week at home. Granted, I have my good and bad days, I sleep alot with the Hizentra treatments, but am satisfied more with this treatment. You don't seem to have the ups and downs as you do with IVIG. It seems that since this medicine is under the skin. You must have an IVIG treatment established before starting the Hizentra.

Hope we are all helping. Remember, you know how you feel, if the doctors don't believe you, keep fighting!

Thanks a lot Nana Chris! I had been having plasmapheresis treatments for the last 3 years, however, my surgeon said that, since the port has to be routed a different way each time, I wouldn't be able to have ports replace more than a couple more times. I had also been on 60 to 80 mg of prednisone and Imuran for about a year and a half, until this past Spring. That's a lousy treatment and so I thought I wanted to re-visit IVIG infusion with you guys. My experience was pretty much validated. Although I get migraines from it, maybe having infusions for a few months in a row might be the trick. Could anyone give me an idea as to how many months in a row they've had an IVIG infusion? I have an appointment with my neurologist tomorrow and I knew he'd be open to re-visiting infusion. Oh, and you mentioned 'ups and downs'. Gosh do have those bad. It's so incredible to be able to talk with people that actually know what I'm talking about. Again, thanks so much Nana Chris for your response.

I've had six months so far and don't plan on quitting anytime soon. I'm lucky I don't get migraines, all I get is tired. I'd give it a shot if I was you, what have you got to lose. BTW: NORD also have there forum up and running again. Gary

Springmang, your timing could not have been better. I had my neurologist appointment bumped to tomorrow afternoon and was going to re-visit a conversation on IVIG. As he is a fan of the treatment, it won't take anything to convince us to go down that road again. Insurance will pay for rounds of infusion every month. Most importantly, I'm running low on options. Thanks again so much for taking the time to throw this stuff at me.

Here's another site for you to check out. http://www.igliving.com/AboutUs.aspx

Thank you sooo much. I had no idea a site like that was floating around cyberspace. It's a really great site!

If I can help you out in any way my email is: ■■■■■■■■■■■■■■■■■■■. Gary

I tried the link for the magazine. I got to the site and read the current issue, but couldn't do the archives. What I did read was very informative.