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

    • April 8, 2021 at 2:16 pm

      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

    • April 8, 2021 at 2:55 pm

      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.

    • April 8, 2021 at 4:21 pm

      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.

      • April 8, 2021 at 4:32 pm

        Thanks for the replies.

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

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

      • August 31, 2021 at 11:03 pm

        im, What are good alternatives to prednisone?

    • April 8, 2021 at 6:23 pm

      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

    • August 23, 2021 at 5:14 pm

      I too had no response from IVIG. Also no luck with Plasmapheresis. Prednisone and Rituximab have started me on my recovery. I had paralyzed vocal cords, along with a plethora of tongue issues, so I had a feeding tube for ~6 months and have been able to eat and drink without it for about 3-4 months.

      Prednisone is harsh, and we tried to gradually come off of it, treating only with Rituximab, but I actually relapsed last month without the Prednisone. Another 20lbs lost due to atrophy. Restarted Prednisone and are looking at substituting the Prednisone with Imuran in about a month.  From my understanding and discussions with Emory, the Rituximab is suppressing my T cells and the Prednisone suppresses my B cells. It is apparent that I need both suppressed.

      • September 14, 2021 at 1:54 pm

        I started Cellcept a little over 2 years ago and have been fortunate to be doing really well on it.  I was taking 1000 mg 2x a day and last month we now dropped 1 500 mg pill a day.  I’m hopeful that in 6 months I’ll still be in good shape and perhaps reduce further.

        I mention this because I think you should research cellcept before going to imuran. My research shows imuran has way more side effects.  I’ve had none on cellcept.

         

        Also, cellcept vs IVIG.  My belief is cellcept will, over time, help retrain your immune system from attacking your nervous system.  The way IVIG is implemented, it doesn’t act the same way and I can’t see how you can get to a state of remission.

        I also communicated well with my doctor on dosages, as we increased or decreased appropriately based on my feedback and my own suggestions.  Be vocal as to what you want based on how you feel.