Asking for more IVIG….

    • Anonymous
      March 20, 2009 at 7:25 pm

      In January due to my excellent recovery on IVIG… recovered reflexes, indurance and stamina improving, seizures decreasing, strength improving, and number of “flattened” rough days decreased, I decreased my dose of IVIG to 40 twice a month as per my neuro’s suggestion.

      It’s now March and I see my neuro at the end of next week. The decreased dose of IVIG doesn’t seem to be serving me well. I have spent a whole week the end of January, an week in February, and the week before last in bed.. having walking and balance difficulties, problems using my arms and hands, and trouble with tremors and concentration. Also, abt 6-7 wks ago I developed a tremor in muscles around and behind my right eye that is a new set of activity.

      Last week, thursday I had IVIG… I had been literally craving it. I had nausea and a good headache for two days, but since then I have been feeling pretty darn good! Strength and balance are much better again, and my eye problems have improved. And I can think clearly again!

      So, is it unreasonable to ask my neuro to go back up to 3 (40g) doses again?

      Is this a reasonable course of treatment?


    • Anonymous
      March 20, 2009 at 8:53 pm

      Hi Erin,
      Absolutely it is reasonable to ask to go back to the dose that was working. It might be worth trying an increase of the 40G to 50G twice a month and see if it holds you. The doctors want to get you down to the least amount that will hold you. My husband faces the same situation next week. He has gained about 20-30 lbs. over the last six months. As a consequence his IVIG is wearing off before the next dose. So he has been sweating over asking his neuro. to increase the dose when he goes in next week as she was talking about decreasing it on his last visit since he had been doing so well. I told him to just relax and say what he needs. I wish you luck. Keep your fingers crossed for my hubby too.

    • Anonymous
      March 20, 2009 at 11:28 pm

      Absolutely ask for more IVIG. You were clearly not ready for tapering & there should be no problem with getting you back to your previous dosage. You know it works & hopefully, in time, you’ll be able to taper down a bit.

      You should ask to have a loading dose to build the IVIG antibodies back up again & then go back to your previous schedule. If it were me, I would wait to gain back all that was lost then ask to try 50 grams twice a month, like Laurel suggested.That way you’ll have a better gauge if it’s working well for you or not.

      Good luck,

    • Anonymous
      March 21, 2009 at 12:13 am


      You have to have the right amount of IVIG that allows you to lead as normal as life as you can.

      I was afraid to ask for more..I was getting 180 grams over two days every three months. I spent most of those three months in pain and in bed or on the couch!

      With the support and help from this group I was able to ask for my IVIG be changed! I was then going every two months. Still not in good shape!

      I am now getting 90 grams every month. This seems to be working for me. We are all different and have to find the dosage and timing of our IVIG that works for us.

      Speak up and tell the doc what works for you.

      Good luck,

    • Anonymous
      March 21, 2009 at 9:33 am

      I agree with the others, you do need to tell your doctor that you felt better and did better with the previous amount of IVIG’S you were on. Our doctors need that feedback from us. He/she can’t look at us and know how we feel because in a sense syndrome means “I don’t know”.

    • Anonymous
      March 21, 2009 at 1:59 pm

      EXACTLY what you’ve outlined to us!
      Bring a notepad so’s you can quote yourself if needed.
      Say YES the IVIG has helped. But this lower dose just isn’t helping near as much!
      I understand about that ‘craving’! The physical need to keep the pains at bay and then the mental salve it provides are enormous. Saying ‘craving’ to a doc tho isn’t necessarily productive? Focus more on the practical ways MORE has helped vs less. Keep that factual.
      Many neuros will try to wean you to the least amount possible to some effect. It depends on their training or something, I think.
      I’ve been fortunate in that my own neuro hasn’t reduced the dose in the years I’ve been on it- but only YOU can be your best advocate to this end. I’d have to say I’d likely scream bloody murder if my dose was decreased? I feel often greedy and guilty at the dose I get already!
      Just be honest about the doses before and after and be clear about the ‘new things’ that have happened since the ‘after’.
      Sell yourself, not your heart or soul…just what is going on! Hope and results SOON!

    • Anonymous
      March 22, 2009 at 12:35 am

      Hi, it is great that you were doing well on the previous plan. I would think about the change as an “experiment” to see if you would do as well on the same dose twice a month instead of three times a month. The answer to that change is “NO”. You did not do as well and you should go back to what worked better for you.
      This does not mean that you cannot try another change in the future, but it is better to make a change from a place where things are working. Sometimes changes do not work when in other situations they might have worked. For example, if someone has an acute infection, many of us get worse, but if we have a really stable month, we are more likely to react the same as other stable months.
      Most people seem to have a lower threshold and if the level gets lower than this, they get symptoms. When you get immunoglobulin, the body immediately starts using it and losing it. For most people, the half life of immunoglobulin is between 21 and 29 days, meaning that if you got 40 g once a month, just before the next infusion, the amount “left” would be only about 20 g (over baseline). Since you need three doses of 40 g in a month, your threshold is likely 32-35ish above baseline. As Lauren points out, this could be given as 50-55 g every two weeks (which works out as less immunoglobulin). Many get monthly immunoglobulin, but then you need an even higher dose at that time to stay about the needed threshold (for example 70-80 g once a month and at the end of the month, you would be at 35-40 g over baseline (if you are a person with a 28 day half-life for immunoglobulin). There has to be a formula for this. In reality, there are differences in rates used and lost based on the amount infused but it can be calculated in you if the doctor checks pre (trough) values, and peak values of immunoglobulin in you. Most doctors just go by what works since people are not perfect metabolic machines. The whole point is next time if you are trying to space to every two weeks, then try a higher dose each of those times.

    • Anonymous
      March 22, 2009 at 9:38 pm

      Thank you all for your support and help understanding dosing. Even though I’ve been on ivig for 22 months I feel like I’m still learning.

      I am definitely going to discuss dosage change with my neuro on friday. I enjoyed only crashing once every week to 10 days instead of having more frequent crashes. It’s one thing to have fatigue and weakness, but another to have a full blown crash.
      If I could do without both, I’d be thrilled. If not, I’ll compromise. If that is an option!