Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

IVIG or Rituximab

I have been getting IVIG for about 2 1/2 years. But now my neurologist wants to switch to Rituximab. I’m so confused. I don’t know what to do. She said I might get back my bad symptoms, which was extreme pain and not being able to walk that well. I don’t want to go backwards!
So what are the pros and cons of your experience with both? Also the Rituximab is going to take away my immune system for awhile.
I am a nurse with medically fragile special needs kids. I can’t have no immune system!!!:disappointed:

Hi sunshine welcome! I just started cell cept in tandem with IVIG for CIDP. Just a week ago. All for now…

Sunset, why does your neuro want to switch? Are you continuing to lose abilities? I think that would be my primary concern - why. My husband had IVIG for a few months and continued to decline drastically so was switched to Rituximab as soon as it was approved. He has been on Rituximab for 18 months. It does make him extremely tired for a few days after treatment but we haven’t seen any significant immune issues - we are very careful about germs but during this time he has been exposed to common colds, flu (me) and strep (our daughter) several times and not contracted anything - not even a mild cold. Generally, Rituximab is a 2 year treatment period, so it isn’t likely to be something you would want to switch back from unless you had no choice. You may also want to make sure your insurance will cover it - since it is off-label there generally has to be an approval. As for any pros, he hasn’t experienced any “pros” from anything. He hasn’t gotten significantly worse except for during a few month period when we had an insurance problem, but he declined so rapidly at first and during that time that he has completely lost all ability to move his wrists or any of his fingers. However, he has not lost the ability to walk, and it is hard to say if that is due to the Rituximab or not. So, my opinion - unless you are getting worse, don’t switch anything. If you are, anything is worth a try.

Originally struck with CIDP in March 2017. I have been on Cellcept since June of 2018 and stopped plasmapheresis in sept of 2018 and so far the Cellcept has kept things the same. Fatigue, weakness and balance and insomnia are an issue, but so far so good with the walking.

Hello sunset. Why hasn’t your Neurologist suggested SCIG? I tried IViG for a time but was having some issues with the treatment. After switching, my opinion is that SGIG Is1000 times better because you don’t have to go into an oncology department and can be done on your own time. You can travel as well. You should ask about it. My neurologist has tried to bring up the immune suppressors as well but I do not want to do it. SCIG is now approved for CIDP. When my neurologist put me on it it was an off label treatment. Check it out.

I’ve had CIDP for ten years. I had a stem cell transplant in 2014. (My own cells). It was successful for three years and then CIDP came back after an infection and incredibly stressful time of caring for my dying father, and moving just ten days after we laid him to rest. I also suffer from PIS primary immune deficiency. I’ve been on prednisone, IVIG, sub q IG, my veins don’t support plasmapheresis. I noticed that after IG infusions my pain became extremely worse, my balance was off and I just felt like I was taking three steps backwards. This is treatment AFTER my transplant. My neurologist has had me on 1000mg of Cytoxan a month. I started back in July. I can’t say that I see any significant improvements but I do not have the issues I was having when on IG therapy. I have to see my Immunologist next month to see what to do about my lack of immune system, I imagine she will put me on antibiotics.
I will see my neurologist in November for an EMG to see if the Cytoxan is making a difference!

I took prednisone for almost a year and it worked wonderfully. I hope that helps.

Ritoxamab is off label for CIDP and you may have a problem with your insurance company. However, I agree if IVIG is working, why switch. I have been on IVIG for 11 years and while I am not the same person I was ten years ago, I still have a good quality of life. We tried Cellcept and IVIG but I was nauseated the entire day. I agree with the person who feels you should not rock the boat.

What does SCIG stand for?

I took prednisone for 8 months and it helped me walk but messed up my body. So it was a good drug and a bad drug. I am so happy it is working for you😁

My neurologist says it’s not safe being on IVIG for a long time. I have been exposed to hepatitis, which I got from one of my infusions.

Subcutaneous Immunoglobulin. It is a main line treatment for Chronic Inflammatory Demylinating Polynueropathy now. Hyzentra is the actual drug that is used in my case. I am surprised your Neurologist hasn’t mentioned it. It is a great alternative to IVIG. It really is easier to manage with it.

Why does your Neurologist want to switch you to the drug instead of the IVIG? Is it working well? I really would ask about SCIG or “Sub Q” as it’s called for short.

She said IVIG isn’t meant to be given for a long period of time. I get it 1 time every 5 weeks where this other med is given 1 time every 6 months.

I will ask her about it when I see her in 2 weeks thank you!

How did it go? What did your doctor say when you mentioned SCIG?