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:
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.
October 19, 2021 at 6:13 pm
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.
July 24, 2022 at 6:39 pm
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.
July 30, 2022 at 7:59 pm
My husband has received 3 ivig treatments and his strength and sensation are maybe improving (wishful thinking?) but his neuropathic pain in his hands and feet is worsening. His doctor hopes it’s a sign of nerve regeneration but he is really miserable. It might help if he knew of others who did have pain that worsened then improved. Did anyone notice that?
July 31, 2022 at 11:30 am
See my 7/24 comment above. Dont know your husbands dx, how long he is treated. For me, as my strength and sensation returned, over 2 yrs, 3 treatments is nothing, and I don’t know his physical status, prior to ivig, but for me the discomfort of the neuropathy in my hands and feet worsened, because the ” healing” was not back to normal but with permanent damage, which can cause the continued neuropathy. Its a horribly debilitating ltd. life for me. Your husband should take some solace in having a caring wife for support. I am on my own and its a struggle every day. There are meds to help with neuropathy discomfort, your docs should know. All have side affects, and all have stopped working for me after covid. Perhaps if his ivig is in very early stages, its possible he can improve. Like I said I , don’t know his pre treatment condition, how long before his diagnosis, how frequently he is re evaluated etc. You inquiry gives very little clinical info. My comments above sum it up for my experience and with others I know. Some people never get results w ivig, some it just stops working for, others seem almost cured. All people all cases different, BUT EARLY DIAGNOSIS AND Early TREATMENT IS KEY.
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