40 days and no response to ivig – can it still work?

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    • #118015
      thgiepsluap
      Participant

      Hi everyone, the title says it all really. I started ivig 40 days ago with a dose of 200g. I had a second dose which started 14 days ago.

      So far I have seen no benefit at all from the ivig and I have actually gotten much worse since starting the treatment.

      Does anyone have experience of responding to immunoglobulins after the 40 day mark?

      I’m trying to figure out if it’s worth waiting another 3 weeks as my neurologist has instructions, or if I should be pushing him to start steroids sooner than that if I don’t respond.

      Thanks and greetings from the UK

    • #118016
      Ron Brunelle
      Participant

      It may be that your doc needs to increase your dosage. Your story sounds a lot like mine years back. I was on 450 ml. every 4 weeks. No improvement. I was nearly crippled. Then my doc doubled the dosage to 900 ml every 3 weeks. Now I’m back on feet and back to work after being out on disability for over year.

    • #118017
      Jim-LA
      Moderator

      IVIg never worked for me. I kept getting worse while on it. Then I transferred to a center of excellence where the neurologists had extensive experience with GBS/CIDP. They put me on a combination of Plasma Exchange and Prednisone. Within 2 days I felt improvement.

      Unfortunately, Prednisone can have many side effects and I seemed susceptible to most of its side effects. If I had to do this again I would get an alternative to Prednisone, I have since learned there are many.

      • #118018
        thgiepsluap
        Participant

        Thanks for the replies.

        Jim – what are the alternatives and which would you recommend?

        Also, how long were you on ivig before you switched?

    • #118023
      Jim-LA
      Moderator

      My first choices would be Rituximab (Rituxan) or CellCept (mycophenolate). Myfortic (mycophenolic acid) is a good alternative too, but you’ll need regular blood tests. CellCept (mycophenolate) is a first-choice medication for preventing organ rejection since it doesn’t hurt the kidneys or liver like its alternatives. But it can have side effects for some.

      In some cases, immunosuppressive drugs such as Imuran (azathioprine), Prograf (tacrolimus), cyclophosphamide, Afinitor (everolimus), cyclosporin, Rapamune (sirolimus), and type 1 interferon (INF-1?) and IFN-beta – can be used to limit corticosteroid and immunoglobulin use and may be indicated because of disease progression or poor response despite aggressive treatment with established therapies such as IVIg.

      In all cases do your research on each drug and discuss them with your doctors. Maybe get a sample of the meds before getting a large amount to make sure you tolerate it OK. Also make sure they are covered properly by your insurance because some can be costly.

      Many of the alternative drugs are discussed here:
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533

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