I’ve tried IVIG, Prednisone, and Plasmapharesis all with zero results. Up next I am planning on trying the chemo drug rituximab. I’ve done a lot of research and found little results. Has anyone here had any success with this drug? The doctors don’t seem very optimistic about it.
I found an old post on this but was wondering how those who used it are doing today. Thanks for any info you can give!
Hey Brooke,
Have you tried looking / searching for ‘rituxan’?
Kind regards,
Willem
Willem Geldof said:
Hey Brooke,
Have you tried looking / searching for 'rituxan'?
Kind regards,
Willem
I'm wondering if you really have CIDP. I have no response to IVIG after one year and now I'm being worked up for a degenerative muscle disorder.
I had rituximab in 2010 and 2011 at Charing Cross hospital in London. Since then I have beeen steadily improving. My wheelchair and scooter are now in storage, and I only need a cane when walking on uneven surfaces or steps.
I had several replies from people using Rituximab when I inquired about the various treatment modalities being used by people on this site, prescribed or OTC. You should get a good response. If not, give me a shout and I’ll look up the names that I saved.
Rituxan saved my partner’s life. When IVIG, PE and steroids did not help, the CIDP did not stop attacking her body until she was given Rituxan. She has gone from a life support vent totally paralyzed to up and walking and able to care for herself.
Yes, my doctors are just about positive with their diagnosis. I’ve had three second opinions as well as my main neurologist confirm the diagnosis of CIDP
Quiltergranny said:
I’m wondering if you really have CIDP. I have no response to IVIG after one year and now I’m being worked up for a degenerative muscle disorder.
I have but the discussions are from years ago. I’m looking for updated info
Willem Geldof said:
Hey Brooke,
Have you tried looking / searching for ‘rituxan’?
Kind regards,
Willem
That is extremely reassuring. As of now, I just use a crutch to walk… Fortunately I was treated before the disease progressed enough to completely paralyze me and although I haven’t improved since, I also haven’t declined. I am hoping rituximab has some positive affect on me because although I can walk with some aid, I am only 20 years old and my quality of life is far from where I wish it was. Thank you for your input.
bob_kinley said:
I had rituximab in 2010 and 2011 at Charing Cross hospital in London. Since then I have beeen steadily improving. My wheelchair and scooter are now in storage, and I only need a cane when walking on uneven surfaces or steps.
Thank you for this info. It really gives me some hope.
tperri said:
Rituxan saved my partner’s life. When IVIG, PE and steroids did not help, the CIDP did not stop attacking her body until she was given Rituxan. She has gone from a life support vent totally paralyzed to up and walking and able to care for herself.
Hi Brooke, Our daughters Neurologist has recommended it for her and is in the process of getting approval for it.Our understanding is that it is an immune suppressant and that it can a) work permanently after one treatment, b) some patients require treatments every six months or so, c) some patients require treatments every year or two. Differs with everyone.
Our daughter is on ivig 5 weekly and this is stopping further permanent damage however its expensive and means she is in hospital regularly which is not good for a 14yo so he wants to try this medication. Its also given through an iv but is a "push iv" so doesnt take as long. Like ivig some people can have reactions to it. He has had success with other patients with it and has heard its used a lot overseas. We are in Australia. Best wishes for your treatment. Catherine
Brooke said:
Yes, my doctors are just about positive with their diagnosis. I've had three second opinions as well as my main neurologist confirm the diagnosis of CIDP
Quiltergranny said:I'm wondering if you really have CIDP. I have no response to IVIG after one year and now I'm being worked up for a degenerative muscle disorder.
OK - good luck with the rituximab!
That’s very reassuring that he has had positive results with this drug. My doctor hasn’t and told me it most likely won’t work. This gives me hope.
My insurance just approved it so I should be getting it soon. I hope your daughter has success with it. Please keep me updated with her experience with rituximab.
Thanks!
Catherine H said:
Hi Brooke, Our daughters Neurologist has recommended it for her and is in the process of getting approval for it.Our understanding is that it is an immune suppressant and that it can a) work permanently after one treatment, b) some patients require treatments every six months or so, c) some patients require treatments every year or two. Differs with everyone.
Our daughter is on ivig 5 weekly and this is stopping further permanent damage however its expensive and means she is in hospital regularly which is not good for a 14yo so he wants to try this medication. Its also given through an iv but is a “push iv” so doesnt take as long. Like ivig some people can have reactions to it. He has had success with other patients with it and has heard its used a lot overseas. We are in Australia. Best wishes for your treatment. Catherine
Hi Brooke. I have recently been diagnosed with CIDP. I am in the early stages. I started Ritaximab (Rituxan) last Friday and will have my second infusion in 2 days. Initially my neurologist was going to start me on IVIG for 6 months to a year. My hematologist/oncologist said I would have a better outcome with Rituxan because my CIDP was caused by IgM, which doesn't show improvement to IVIG. My anti-MAG antibodies are sky high, the highest my hematologist has ever seen and my neurologist has seen only another as high as mine. I had already researched and knew the IVIG would not help me. People saw improvement for only 1-2 months for those whose CIDP is from the IgM. My neurologist agreed to go with the Rituxan.
I will have 1 infusion a week for 4 weeks. Then in a couple of months I will have another EMG of my arms and legs.
My hematologist has a patient who already has done the series of 4 infusions and she is having returning feeling in her leg.
Rituxan blocks the receptor site on the cell that makes the 'pregnant cells with the anti-MAG antibodies'. Thus blocking the production of antibodies that destroy the myelin. If the nerve axon has not been destroyed, the myelin regenerates and one should see improvement.
Rituxan is part human and part mouse. One can have anaphylaxis because of the mouse part. So, they premeditated me with Benadryl to decrease chance of reaction and also gave me Tylenol as some people get a headache. The first infusion was 4 hours long, slow to see how I did. The next 3 infusions will be 3 hours long. I did very well with the infusion. Feel a little tired is all.
My take-away is; Not all CIDP causes are the same. What works for one may not work for another because the causative factor may be different. It also makes a difference if one is diagnosed early.
I am very hopeful. I'll let you know how I do.
Hi Roxie! The doctors are unsure about the cause of my CIDP. How were they able to determine the cause of yours? I’m just curious because I WISH I knew what caused my disease. Good luck with your treatment!
Roxie said:
Hi Brooke. I have recently been diagnosed with CIDP. I am in the early stages. I started Ritaximab (Rituxan) last Friday and will have my second infusion in 2 days. Initially my neurologist was going to start me on IVIG for 6 months to a year. My hematologist/oncologist said I would have a better outcome with Rituxan because my CIDP was caused by IgM, which doesn’t show improvement to IVIG. My anti-MAG antibodies are sky high, the highest my hematologist has ever seen and my neurologist has seen only another as high as mine. I had already researched and knew the IVIG would not help me. People saw improvement for only 1-2 months for those whose CIDP is from the IgM. My neurologist agreed to go with the Rituxan.
I will have 1 infusion a week for 4 weeks. Then in a couple of months I will have another EMG of my arms and legs.
My hematologist has a patient who already has done the series of 4 infusions and she is having returning feeling in her leg.
Rituxan blocks the receptor site on the cell that makes the ‘pregnant cells with the anti-MAG antibodies’. Thus blocking the production of antibodies that destroy the myelin. If the nerve axon has not been destroyed, the myelin regenerates and one should see improvement.
Rituxan is part human and part mouse. One can have anaphylaxis because of the mouse part. So, they premeditated me with Benadryl to decrease chance of reaction and also gave me Tylenol as some people get a headache. The first infusion was 4 hours long, slow to see how I did. The next 3 infusions will be 3 hours long. I did very well with the infusion. Feel a little tired is all.
My take-away is; Not all CIDP causes are the same. What works for one may not work for another because the causative factor may be different. It also makes a difference if one is diagnosed early.
I am very hopeful. I’ll let you know how I do.
I have MGUS -Monoclonal gammopathy of undetermined significance (MGUS, unknown or uncertain may be substituted for undetermined), formerly benign monoclonal gammopathy, is a condition in which a paraprotein is found in the blood during standard laboratory tests.
This paraprotein is abnormal. This usually occurs after 60 years old in a certain percentage of people. It can be benign or can lead to serious conditions. In MGUS the levels are lower and is pretty benign, only 1-2% a year transform to Multiple Myeloma (Cancer). Though you can get a neuropathy with MGUS as well.
CIDP is Chronic Inflammatory Demyelinating Polyneuropathy. I understand some are more IgG related. But it is an immune disorder in that the body begins reacting against itself and there is demyelination of the nerves in the legs and sometimes arms. When you meet certain criteria it is called CIDP.
My doctors ran all kinds of labs tests, light chains, genotyping,Bone marrow biopsy, spinal tap, MRI of the brain (to to rule out MS), EMG, Elisa anti-MAG. Because of the abnormal IgM and the results of the other tests, they knew it was IgM not IgG related.
My oncologist/hematologist had been involved with the research on Rituxan when it was being developed. But the information I read about my type didn't give me much hope because I read studies that didn't show real improvement with the IVIG.
So for me, this is my best shot for now. Things can change, new drugs may be introduced. I plan on being as active as I can and learn as much as I can. I really trust my doctor, too.
Everyone's case is a little different. We just need to stop the inflammation that causes the demyelination of the nerves.
I don't know if that helps. I hope so.
Have you though of applying for Dr. Burt's study at Southwesetrn on CIDP?
http://www.stemcellresearchfacts.org/dr-richard-burt/
BEst!
Hi Loni. I have done a bit of research on that. The thing that separates me from the success stories is that I am not getting progressively worse. My doctor thinks we may have stopped the disease from spreading. Thank you so much for your help!
Loni Hart said:
Have you though of applying for Dr. Burt’s study at Southwesetrn on CIDP?
http://www.stemcellresearchfacts.org/dr-richard-burt/
BEst!
Wow- your story sounds very familiar. My neurologist has been trying to get me on Rituxin for over a year,but my insurance (Premera Blue Cross) is denying it stating it has not been approved for CIDP. I also have IgM kappa parateinemia. I have been on ivig for 4 years and I feel as though it does not have the same effectiveness it once had. I wish you the best with the Rituxin hopefully my insurance will let me give it a try.
Roxie said:
I have MGUS -Monoclonal gammopathy of undetermined significance (MGUS, unknown or uncertain may be substituted for undetermined), formerly benign monoclonal gammopathy, is a condition in which a paraprotein is found in the blood during standard laboratory tests.
This paraprotein is abnormal. This usually occurs after 60 years old in a certain percentage of people. It can be benign or can lead to serious conditions. In MGUS the levels are lower and is pretty benign, only 1-2% a year transform to Multiple Myeloma (Cancer). Though you can get a neuropathy with MGUS as well.
CIDP is Chronic Inflammatory Demyelinating Polyneuropathy. I understand some are more IgG related. But it is an immune disorder in that the body begins reacting against itself and there is demyelination of the nerves in the legs and sometimes arms. When you meet certain criteria it is called CIDP.
My doctors ran all kinds of labs tests, light chains, genotyping,Bone marrow biopsy, spinal tap, MRI of the brain (to to rule out MS), EMG, Elisa anti-MAG. Because of the abnormal IgM and the results of the other tests, they knew it was IgM not IgG related.
My oncologist/hematologist had been involved with the research on Rituxan when it was being developed. But the information I read about my type didn't give me much hope because I read studies that didn't show real improvement with the IVIG.
So for me, this is my best shot for now. Things can change, new drugs may be introduced. I plan on being as active as I can and learn as much as I can. I really trust my doctor, too.
Everyone's case is a little different. We just need to stop the inflammation that causes the demyelination of the nerves.
I don't know if that helps. I hope so.