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Living with Polyneuropathy CIDP, GBS, & CMT

Rituxan - need help to decide. Anyone had success?


#1

Long road to where I am at this point. Neuro is suggesting Rituxan. I had such a bad experience with Cytoxan (left me with new issues relating to bone marrow) with zero benefit. Now I am.leary of Rituxan.if anyone has feedback on whether it helped or not, I would truly appreciate your response. I am barely able to walk even with a cane and my CIDP continues to progress, so a time decision is necessary. Thanks in advance.
Mike


#2

Hi Mike,

I’m sorry to hear about your suffering. I have PN caused by a high level of anti-mag due to an elevated IgM level which causes pain, buzzing and aching in my hands and feet. I started with Rheumatology, dermatology, neuro then ended up at hema/onco. Long story short, I’ve had 5 infusions with Rituxan. The only help has been with pain in my hands. I still walk with a cane and will need to use a wheelchair on vacation. I know each person is different. It could be that you would respond nicely. I fired my first oncologist last August and I’m not happy with the second. So now, I’m seeing a Waldenstrom specialist at Weill Cornell in NY. Please keep trying to find something that works. I believe that Rituxan with Cytoxan or Imbruvica would help me. I have my appt in NY in two weeks. I wish you the best Mike.

Michele


#3

I work in a pharm, I don’t have Polynueropathy but I thought I’d toss out a few things I know about drugs for your consideration.

In very general terms the difference between the two is that Cytoxan is a chemotheorpy drug that works by stopping or slowing cell growth - which is pretty much your whole immune system. Rituxan is a biologic drug that specifically destroys the B cells. B cells have been coming under more and more study and are being connected to more and more immune issues (here’s one example: http://discovermagazine.com/2013/may/01-are-b-cells-to-blame-for-chronic-fatigue-syndrome).

Cytoxan has been around longer but does seem to be considered the more toxic of the two. Rituxan is somewhat new and somewhat expensive so you may need to get a prior auth via your insurance for treatment (not a big deal).

I’ve heard of people having Rituxan treatment and continuing with other daily treatments between them. This might be something to discuss with your doctor.

Good luck!

azurelle


#4

Azurell,

Thank you for your thoughtful and informative response. Much appreciated.

Mike


#5

Michele - I’m glad that Rituxan helped with the pain in your hands. That alone must be an awful thing to live with on top of all your other symptoms. Thank you for taking the time to respond. Sounds like you may be considering Cytoxan, off label I assume. Just know that it can mess with your bone marrow, as it did with me. Be sure you have a detailed discussion w your docs about long term side effects of which it has many. I am hearing that Rituxan is the preferred drug now, although it is difficult to ascertain what success either drug has had for these autoimmune neuropathys. I consider myself fortunate that the '“only” effect of my CIDP is my inability to walk w/o a cane, or recently, a walker (wheelchair next year). I haven’t had the chronic severe pain endured by others on this forum and I am grateful for that. I don’t know-how you cope psychologically with all you deal with. Good luck at Cornell Weill. I live in NY and I have been treated at the peripheral neuropathy center there. They are good, but the science just isn’t all known yet.
Mike


#6

Its important to understand that RITUXAN is not chemotherapy. RITUXAN is a type of antibody therapy that can be used alone or with chemotherapy. RITUXAN targets and attaches to the CD20 protein found on the surface of blood cells. A completlet DIFFERENT process than “chemotherapy” The clue is in the generic name rituximab The MAB at the end means that it is a Monoclonal antibody.

Monoclonal antibodies are antibodies that are made by identical immune cells that are all clones of a unique parent cell. Monoclonal antibodies can have monovalent affinity, in that they bind to the same epitope (the part of an antigen that is recognized by the antibody).

TJ


#7

Thank you for that important information. Much appreciated.

Mike