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Rituximab success story

Posted by scditto2000 @scditto2000, Apr 6 8:13pm

I was living with peripheral neuropathy for two years. I was first diagnosed as CIDP and I was taking IVIG infusions, which ultimately didn’t help much and resulted in blood clots. I went to the Mayo Clinic to get another opinion, and they changed my diagnosis to an IgM associated neuropathy and recommended rituximab infusion, which has less chance of causing a blood clot. After reading these message boards, it was clear many people had questions about rituximab and had mixed results in their treatment. I’m happy to report that as of this week, I no longer have an M protein in my blood and I’m feeling much higher energy with less pain and numbness in my legs and arms. Not at all sure if rituximab is the right answer for others, but in my case, it’s a life changer. I was using a cane and felt like I was headed towards a wheelchair and now I’m walking and swimming and playing with the grandkids again. I hope everyone here can see similar positive results with whatever challenge you’re facing.

Interested in more discussions like this? Go to the Neuropathy Support Group.

celia16 | @celia16 | Apr 7 6:57am

So glad you’re better! I’m going to explore this option for my mom.

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 7 8:22am

Hello @scditto2000, I would like to add my welcome to Connect along with @celia16 and others. It's great to hear that you have had success with Rituximab. @suetex, @jeffls, and @savomic have also discussed Rituximab and may also have some success to share with the treatment.

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upnort | @upnort | Apr 7 11:27am

I'm glad the Rituximab is working for you. I was originally diagnosed with idiopathic myelopathy 4 years ago, and then diagnosed with Neuromyelitis Optica by my local neurologist and put on Rituximab infusions. The treatments did not stabilize or improve my symptoms (numbness from toes to waist, drop foot). I returned to Mayo this winter and was told I did not have NMO and to discontinue the Rituximab infusions. I recently tried Botox injections in my right leg to deal with spasticity. Unfortunately, the injections did nothing for my symptoms and I will once again return to Mayo at the end of this month to see a specialist in their spasticity clinic. In the meantime, I have gone from walking with a limp to walking sticks to a walker. My journey for an answer continues.
Again, I am happy for you that you have found your "silver bullet" in terms of mobility and quality of life.

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suetex | @suetex | Apr 7 12:53pm

I start rituximab Tuesday. I too have been using IVIg with no improvement. (No clots either.) This gives me additional hope. Some days, that's all that keeps us going. More, as I know it.

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suetex | @suetex | Apr 8 10:23am

NIH has an article dealing with this subject and it is titled:
"Monoclonal Gammopathy Associated Peripheral Neuropathy: Diagnosis and Management" It is very tecnical and way above my head. But you can see what our poster had to go through to get to his success story. The Mayo Clinic does seem to be the place to go.

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