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Old 03-22-2011, 07:24 AM
Connan Connan is offline
Junior Member
 
Join Date: May 2010
Posts: 9
10 yr Member
Connan Connan is offline
Junior Member
 
Join Date: May 2010
Posts: 9
10 yr Member
Default Rituximab

Quote:
Originally Posted by codor@fsmail.net View Post
Hello, I have anti mag neuropathy and my consultant is suggesting rituximab but I have been concerned about the possible side effects can you tell me how it has affected you? Colin.
Colin
I am 73 with a 15 year history of Monoclonel Gamopathy. Anti-mag was diagnosed about 10 years ago. I originally took IVIG without much success back in 2000. About a year ago my balance got worse and I decided to seek help again. Hematology and Neurology at the Mayo clinic recommended Rituximab. I spent about a year trying to find a way to get the drug and to research the effects. It was described by my local oncologist as a "mild" chemo. I think that is reasonable definition as far as tolerating the RX.

I completed the standard protocol of 4 weekly infusions on Feb 7. Two days later I scraped my shin with an air-conditioner metal filter. I spent the next 4 weeks trying to get rid of the infection. Since the immune system is compromised you need to be cautious about treating skin abrasions and other infectious sources. The immune system is compromised for about 10 months. It has been 6 weeks and I have not had any other colds or viruses even though I have been exposed to those. The infusions were a piece of cake... just hives on the first infusion... they stopped and gave me 2 vials of steroids and it cleared up. The infusion was resumed in 30 minutes with no further problems. The infusion nurses gave me two Benedryls and steroid vial by IV prior to each infusions.

I should have tried to quanify the PN prior to taking the Rituximab. I have lived with the disease for so long I forget all of the symptoms plus the symptoms vary from day to day. For example.. do you feel cold tile under your feet? Or can you stand on one foot? Can you close your eyes and stand on both feet without falling over? Try and quantify some of these symptoms so that after you take the Rituximab you can try and detect improvement. I think I have improvement but it may be wishful thinking. I have appointments with Mayo Hematology and Neurology in late April and I will see what they have to say. Maybe they will check some nerve conductions. One more thing before taking the Rituximab see if you can get an abbreviated nerve conduction tests as a baseline. A few on the feet, legs, and hands. At some point you will want to know if there is any nerve regeneration or further degrading of the nerves.

In summary..... the Rituximab was well tolerated just be careful of your compromised immune system, particularly with staph infections. I didnt know the skin has lots of staph all over it. Keep peroxide around and wash and flush all abrasions immediately. Something stronger than Hydrogen Peroxide would be good to have around.

Good luck
Bob
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