How much IVIG is too much?

    • Anonymous
      November 5, 2010 at 2:32 pm

      I’ve had 9 sessions of 5 days each of in-patient IVIG this year. Now a consulting neurologist has suggested that it is way too much, and the infusions have stopped.

      Does anyone know how much IVIG is too much?

      Other than funky blood tests (usually abnormal liver tests) I seem to tolerate it OK. Thoughts?

      I have CIDP, lupus, probably Sjogren’s and possibly autoimmune hepatitis. Ugh. I’m on Cellcept (750 mg), Prednisone (15 mg), Plaquenil (400 mg), and assorted other goodies.

    • Anonymous
      November 5, 2010 at 3:01 pm

      No one really knows how much IVIG is too much. The thing with IVIG & treating CIDP is no one is the same. Some people require more IVIG more often & some less. We often say here that treating CIDP is an art form.

      I went through something similar with my daughter 4 years ago. She was on an IVIG treatment regime that really has never been heard of before that involved extremely high doses of IVIG (4 grams per kg, 2-3 times a week)

      I took her to a new neuro & she freaked out about it. She took my daughter off of IVIG & put her on steroids. She got worse & I returned to the 1st dr with the high doses of IVIG. She is now getting .75 grams per kg every 4 weeks – so something must have worked out right.

      The 2nd neuro said the concern was for the blood getting too thick & causing a stroke. We tested blood viscosity & it was well within normal limits.

      Maybe suggest a blood viscosity test.

      How much IVIG are you getting at each session? IVIG is dosed based on weight & most people get 2 grams per kg (considered loading doses) or 1 gram per kg (maintenance dose).

      How often are you getting the IVIG & when did sessions start?

      Getting 2 grams per kg monthly is not really a big deal. I don’t think getting 2 grams per kg bi-weekly is either – but it depends on the individual. You mention getting back funky blood test results. That may be the sole reason the dr decided to stop the IVIG. I do know that kidney & liver function do need to be checked regularly while taking IVIG. Is the dr giving you specific info on why he/she wants to stop the IVIG altogether? You should ask if the other medications could be causing the funky blood test results.

      Is it possible to try plasmapheresis?


    • Anonymous
      November 5, 2010 at 3:37 pm

      Thanks so much for the answer. I was getting 30 gm per day for 5 days – about the amount you suggested based on 72 kg weight. I think that math is right?! The neuro said she was worried about putting that much protein through my kidneys. The consulting neuro had a different view than I’ve heard from other specialists – let’s take everything away and see what happens!

      OK, I really dislike the ivig and it doesn’t seem to have an immediate effect, but I’m clearly loosing ground since I went off it two months ago.

      To make things even more complicated, my docs switched out Imuran for Cellcept last month and that could be causing the set back as well.

      I recognize this is extraordinarily complicated, but it’s also extremely frustrating…

    • Anonymous
      November 6, 2010 at 8:35 am

      Why did your doctor change from Imuran to Cellcept? My doc has me on Imuran. I have read good things about Cellcept, but he says he prefers Imuran, and will only switch me to Cellcept if the side effects of Imuran are unacceptable.

    • November 7, 2010 at 8:56 am

      At last years symposium, it was suggested that cell cept NOT be used to treat cidp. I believe it was Dr. Lewis who advised this. Maybe your doc would be willing to consult him, or perhaps you could e-mail him at the univ of Mich. He usually returns e-mails. If you really don’t see a significant improvement w/ivig and your doc has you on imunosuppressants as well, maybe you can research the cytoxan protocol that many are currently doing and seeing great results. As always, research for yourself, for what meets your needs and risk vs. benefit. Good luck, keep us posted