Rituximab (Rutixn)

Hi Jim,

I missed your posts on anemia the other night , but have read the links proved and appreciate your reply.I am glad to hear you are seeing results beyond the projected 3 year mark. I am just over the 20 year mark and am optimistic the Retuxin will at least stop this latest activity of the disease. The neuro at Vanderbilt is asking my attending neuro here in Atlanta to do one infusion of retuxin, followed by a second infusion two weeks later, then once a month for six months. She also wants me to continue the plasma exchanges every three weeks with the 1,000 mg Iv solumedrol. If agreed to, this will be the most aggressive effort I have seen since the ’96 diagnosis. When I had GBS in ’85, I received no treatment other than PT, but back then there was not much to offer and I took what mother nature gave me. As time has passed and I see all of the new therapies that are here now, and in the hopper, I am always encouraged.
My Atlanta neruo did mention Ocrelizumab in his referral letter to the doctor at Vanderbilt, but told me that is not yet available, but does show promise in the near future. The Vanderbilt doctor also talked about some of the outstanding results they have had with new stem cell treatments. She has one such patient who was chair bound and is now walking, but added that this is a very difficult process and carried higher risks and is considered a last resort option. I’m not there yet.
I wish I had inquired and visited this center of excellence much sooner as I now have an option that was not offered to me prior to the Vandy visit.
Thanks for you response and I hope you continue to see more wiggle in those toes, regard,
Fred

Hi guys,
Jim-LA and cer100
Sorry I dropped of the planet since my post in February. It has been a roller coaster ride since my visit to Vanderbilt University Neurology department. The Doctors conversation at Vandy to me was that I should have five consecutive day of plasma exchanges, then rituxin once weekly for four weeks, then monthly for six months, then once every six months if it helps. The doctor ran muscle and nerve conduction studies and confirmed the diagnosis of CIDP. She said I could have the treatment done here in Atlanta with my long time neuro, or I could come to Vanderbilt and she would over see the treatment. Financially, local was my first choice.

She conveyed her findings to my local doctor, who preceded to tell me all of the reasons it was to late to try Rituxin because of the long term progression of my disease and he did not think it would help. After three months of trying a combo of IVIG and plasma exchanges, during which the weakness continued to progress, he reluctantly agreed to start Rituxan. This was only after I presented him with two studies showing positive results. However, he only is dosing initally, then again in 14 days, today, then every six months. He says this is the rituxin protocol used for MS patients.Based on the information I can find, this is not sufficient to make any noticeable changes, and is not the protocol suggested by the neuro at Vanderbilt. I am looking for another neuro in the local area that has CIDP and GBS cases because of the expenses of having treatment out of state. But, if going to Nashville is what it takes, I’ll do it if my local doesn’t change his mind.

cer100,
I have been on plasma exchanges off and on since 1996. I have had them daily, weekly, monthly and currently once every three weeks (somewhere around 400 treatments). The only time I was hospitalized was for the very first exchange. I have had up to five consecutive days as an out patient in the local hospital day surgery unit with no problems. Because my veins were getting a lot of scar tissue from the long term needle punctures, I had two Vortex Ports implanted several years ago and they work flawlessly.I am currently doing a three liter albumin exchange every three weeks, followed by 500 mg IV solumedrol (I was taking 1000, but reduced it). After the plasma exchanges, I get IVIG once a month for two months, then in the third month I get three days in a row of IVIG. The doctor has also added Rituxin. So, I am currently taking three treatment protocols at the same time. My experience with plasma exchanges has been good and over the years has always been my go to treatment when a flare begins. Best of luck to you. Feel free to ask more questions about PE if you have any.

Jim-LA,
Thanks again for your response and the information links. Scheduling the IVIG and Rituxin around the PE has been a challenge.

cer100,

Forgot to answer your time question. When I was doing PE with vein sticks it took about two hours if I was well hydrated and a little longer if not. With the Vortex Ports, then have to use CATH-FLO in the ports for about an hour before they can start the exchange, so the total time now takes about 3 1/2 to 4 hours.