Reply To: HELP IVIG not working post covid 19 infected April 2020.
There are a number of alternative therapies that might work for some. 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 a few more 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
There are many discussions about supplements in these forums too. Here are a few that might be helpful:
Vitamins and supplements for CIDP
Deficiencies of vitamins B12 (Methylcobalamin 5000MCG) and D3 (125MCG, 5000IU) have also been known to be involved with CIDP-related muscle atrophy and some members have cited taking such supplements as helping improve their condition. More info here:
https://forum.gbs-cidp.org/topic/b-12-deficiency-amp-cidp
https://forum.gbs-cidp.org/topic/vitamin-d
Pammy, I wish you the best of luck in finding what might work for you.