February 23, 2017 at 8:25 pm
I haven’t posted in years, but am curious if anyone has been treated for their CIDP with Rituxin. I was diagnosed back in 1985 and have been treated over the years with the usual, IVIG, prednisone, Plasma Exchange, Cytoxyx and other oral medications over the years. For the past several years I have been able to maintain a fairly stable status with plasma exchange every three weeks followed by a 1,000 mg IV methoprednisone infusion. Several months ago I began see loss of strength and balance and my local neuro agreed to refer me to Vanderbilt Medical Center in Nashville, TN, which is one of the Foundations center of excellence. The doctors there were great and have recommended changing my treatment to include Retuxin in addition the the every three week plasma exchanges.
Looking up the drug, I see Aetna Insurance web site that says Retuxin is not considered medically necessary for CIDP, and I have Aetna for prescription coverage. My questions are, if you have, or are on Retuxin, how did you get insurance to cover it, and what were your side effects and results. Any replies are appreciated. Thanks
February 23, 2017 at 10:14 pm
Rather than start a whole new thread on the med, why not post additional comments into one of the many existing forum topic threads here:
You’ll learn a lot about Rituxan from our members, including discussions on getting insurance companies to cover the drug.
A newer version of a similar drug presently in clinical trial is here:
February 24, 2017 at 9:14 pm
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,
February 25, 2017 at 12:48 am
Hi Fred, I think it’s awful how disabling this disease can be over the years. You have had to deal with it for a couple decades, you’re a trooper! I’m encouraged to hear you have connected with a center of excellence and they seem to be really on top of things for you.
Mixing PE and Rituximab may be a bit tricky if the PE is administered before the Rituxan binds with the CD20 on your B cells. The timing of PE could be counterproductive to the successful treatment using Rituximab. Here are a couple articles about the possible interactions and suggested approaches. Your center of excellence docs are probably already on top of this though, but you should know about it too:
Best of luck with your treatments. I hope it makes a big difference in your quality of life as it has for me.
PS – I was very close to getting the HSCT a couple years ago. More info here:
September 11, 2017 at 7:29 am
Is there anybody out there such a rare case like me 🙂 ? ( see short summary of my story below )
Have been on Enbrel since sept 2003.
It stopped the progress of CIDP and I gained some strength back
Now my doctor wants to add Rituximab ( Mabthera ) in order for me to gain more strength back
Anybody tried this mixture ?
Any comments appreciated
First symptoms late 1997 – balance
Tingling – cramps early 1998
Weakness in legs late 1998
Diagnosed feb 1999 –
Started IVIG treatment following diagnozes – very little improvement
80 mg prednizolone – march 1999 – great improvement
Tapered down the prednizolon and weakness and numbness came back
Plasmapheresis – little improvement
2002 – Found an article about Enbrel as possible treatment ( Dr Norman Latov in NY )
Visited Dr Norman Latov twice 2003
Started Enbrel 25 ml x 2 week
Started improvement and felt much better within 2 weeks
Today – only enbrel
Still facing weakness – haven’t been able to move my toes since 1999 but they still look great though 🙂
Strength is weak and I can’t lift my heels from the ground
Have trouble keeping balance
Hands are almost normal – numbness in fingers
September 11, 2017 at 4:57 pm
Interesting to read of your improvements with Enbrel. I was on it for other reasons and they took me off once CIDP DX since there were concerns about it causing neuro disorders.
September 11, 2017 at 10:11 pm
Off topic question for the OP
She also wants me to continue the plasma exchanges every three weeks with the 1,000 mg Iv solumedrol.
My neuro wants to talk PE, but it sounded like a 2 week in patient stay with future repeating procedures. On your 3 week PE schedule is that in patient and how long does it usually take?
September 14, 2017 at 7:50 pm
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.
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.
Thanks again for your response and the information links. Scheduling the IVIG and Rituxin around the PE has been a challenge.
September 14, 2017 at 7:54 pm
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.
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