IVIG treatment for GBS

    • Anonymous
      May 11, 2014 at 11:40 pm

      Recently after a spinal tap I was diagnosed with GBS and given a round of IVIG treatment. After about 2 1/2 weeks I was given an EGM which showed no measurable improvement. Although the weakness is concentrated in my legs and getting more intense I can still walk. Do you think the IVIG treatment would slow the process down so that it won’t spread to my arms as quickly? Is it common to have a second round of IVIG treatment?

    • May 12, 2014 at 2:30 am

      IVIg is not effective for everyone, it didn’t help me much and I had better results with Plasma Exchange.

      It is not common for IVIg to be given just once when treating GBS. IVIg is usually given in a ‘loading dose’ for GBS where you get it daily for about 5 days. I was given it daily for 10 days and it did little to stop the progression for me. After the loading dose, maintenance doses may be given every 1-2 weeks to keep GBS in check.

      IVIg stops your autoimmune system from making more bad antibodies, but does not remove the bad antibodies already released into your system, these can continue to do damage. Plasma Exchange (PE) removes the bad antibodies but does not stop your body from producing more. I think, depending on the severity of individual cases, that treatment should consist of 3 days of PE followed by 5 days of IVIg (or SCIg).

      Some info about IVIg can be found here: http://www.cidpusa.org/P/ivig.htm

      GBS usually peaks within 3-6 weeks and recovery begins. Recovery can be fast and pretty complete for some, while others have an incomplete recovery. Residuals can last for years and this varies by individual.

      How long do you think you have had the GBS?

    • GH
      May 12, 2014 at 2:36 am

      It’s correct that the loading dose is generally given over five days. This may be sufficient for some cases of GBS. In others, more IvIg might be administered. In my case, the initial loading dose seemed to arrest the progress of the weakness, but when it continued I was then given another five-day treatment. When that proved insufficient, I was reclassified as CIDP and given plasma exchange (PE).

    • Anonymous
      May 12, 2014 at 11:02 am

      I contracted GBS the first week of March, when given the initial treatment the first bottle injected did not completely go into my vein, some went under my skin, my hand blew up like a balloon, I squeezed out and got a wash cloth wet from mopping it up. After the test EMG the Dr told me I had ALS because of no measurable improvement.Not sure of his bed manners!Presently I’m going back to the hospital not until the 23 of May to find out what next they are going to do for me.Thanks for your reply.

    • GH
      May 12, 2014 at 3:44 pm

      That’s just crazy. They should not be screwing up the Iv insertion. And your neurologist should not be making such an off-the-cuff diagnosis. These neuropathies are not so cut and dried.