Who has tried Rituxan?

The IVIG stopped working on me & if fl they refuse to do my plasma pharesis on out patient. Besides it only works for 2 weeks. My Drs decided to give me Rituxan after this round of okasma pharesis. I want to know how long it takes for the Rituxan to start working? & should I be CIDP symptom free before starting the Rituxan?? Help!!!

I saw an improvement after two weeks. I don't know how I would be CIDP symptom free before taking it? It certainly helped to stabilize my condition.

Thank u sooo much for responding lorimack!.. What was ur condition b4 starting the Rituxan?

& how long have u been taking the Rituxan? How often do u get it?

Hi Heather and Lorimack! I’d like to know more about Rituxan also. How do you take it? Is it in pill form? Or do you take it as an infusion through an IV or port? Or is it an injection? I was just wondering in case my neurologist decides to use it along with my plasmapheresis.

One more question (I promise LOL) - how many plasmapheresis treatments do you get before starting on the Rituxan? Right now I’m only on my 3rd round. I had 4 in a row to start. Two weeks later I had 2 more because my doctor thought I wasn’t improving fast enough. I made a slow but steady improvement for 3 weeks before crashing down again. My doctor was out of the office that week, then we had an insurance misunderstanding, so it was about 5-6 weeks before I could get treated again. Ugh! I did 4 in a row, and again I’m improving. We are looking at doing more in 3 weeks, since that seems to be the “magic” number. Do you get Rituxan in between treatments, or do you stop plasmapheresis once you take immunosuppressant drugs?

It’s interesting how doctors prescribe plasmapheresis. I’ve read of one person (who said she was a severe case) who started with 3 days a week. She did this for a long time, but went from bedridden, to a wheelchair, then a walker, a cane, and now she walks on her own. She does one plasma treatment a week now, and will eventually try to have one every 2 weeks. I think she was also on prednisone for a while, but no longer takes it. It makes me wonder if once you remove the antibodies on a regular basis if you can maintain improvement?

Have a wonderful, pain-free day!!


I have not gotten the Riruxan yet but they do my plasma pharesis every other day. 5 treatments total. Plan is to do the Rituxan so I don’t need plasma pharesis anymore. It’s a IV infusion.

Thanks Heather! Good luck with your treatment. Let us know how it works for you!


Heather R said:
I have not gotten the Riruxan yet but they do my plasma pharesis every other day. 5 treatments total. Plan is to do the Rituxan so I don't need plasma pharesis anymore. It's a IV infusion.

Hi Heather & Paula,

I was diagnosed in 2006. Wow, I've been receiving treatment for probably 6 years now. I receive IVIG every other week, 80 grams and we are done in about 3 hours! I receive Rituxan when the IVIG doesn't work any longer and I start to fail. Symptoms like, I can't hold a pen, buttons, open jars, pick up pennies etc. I have had 3 treatments, approximately every two years, of Rituxan via IV each time it is for four days a week apart. The last time I had treatment was over two year ago and I was back to "Normal" as can be after the second treatment or two weeks. This seems to be my protocol...when the IVIG doesn't hold me any longer I then get Rituxan and I'm back to where I was before things started to fail. I never stop the IVIG treatment. I hope I have answered your question?



Heather R said:

Thank u sooo much for responding lorimack!.... What was ur condition b4 starting the Rituxan?

Wow so you where able to get back on the IVIG… That’s great but having to do an IVIG every other week really sucks. My Drs are trying the Rituxan on me for the first time & are not sure how often I have to do it & I am pretty much going to be their test dummy with it… There is a study in Chicago right now I want to join. It is for Hematopoietic Stem Cell Transplantation. Just like me you meet the criterias. I read that it has been done on over 700 people in Europe and all those people have been CIDP symptom free since getting it. I am discussing with my family if I should join the study. I will sell my soul to the devil to get rid of this disease. It SUCKS! Thanks for the info Lori.

Lori how many days after your last Rituxan treatment did you start your IVIG treatments again? My Drs are gonna let me try to get my IVIG again but you are the only person I know to have experience with it. The Drs are going off my word these days.