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

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.

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.

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

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.

Thgiepsluap,

I was just diagnosed with CIDP and will be starting a loading treatment of IvIg. If I understand correctly I will be having about a 5 hour long infusion for 5 days in a row. Than what comes next hasn’t been discussed yet. Maybe I’m wrong but it sounds like you have had like only 2 actual infusions in 40 days? I think they need to load a person up big time first off for it to work. I haven’t started any of this yet so I might be confused on how this is supposed to work, but I have faith in my neurologist.

Although IVIG has stopped working for me now post covid, when I was first diagnosed, I was in a wheelchair for almost a yr w late dx.  It took 2 yrs for me to get out of the chair and walk.  40 days is nothing. Myelin grows at some ridiculous 1 mm a month or something.  I never ” felt” it working after infusions.  I got it every 2 weeks 50 gms after loading dose 5 consecutive days.  After 6 mos. doc said I could start PT, based on vibration and other sensory and motor tests he did in office. Prior, there was no point as the nerves were so damaged the muscles we dead, I felt nothing. The motor came back with PT, after 2 yrs, every 2 weeks infusions. However, I never got back to normal, and as sensation came back too, it came back in a painful way, due to the nerve damage because my dx was too late.  The key is quick diagnosis prior to real muscle weakness, constant neuropathy. I know a person who got dx the same week he first felt tingling in feet. Immediate Ivig on a regular basis, 2 times a month for 3 yrs, now every 6 weeks and he is normal. 40 days is nothing if you have severe demyelination.