My son tousley did receive 1 set of 4 infusions of rituxin 3 years ago. He was also on steroids/daily and ivig infusions once/month. He has very slowly gone off the steroids and is also very slowly going off the ivig. He has not had a relapse since the rituxin and continues to get stronger. If you cannot afford the rituxin and the ins won’t cover it, call the company that makes rituxin. they may help you out. His Dr has tried it with other cidp patients.
The trial is for 2 years. I took 785 mg of Rituxin once a week for four weeks.
As I said before, I think it has helped some. The tingling and numbness around my ankles is a little better. The feelings that neuropathy brings are hard to describe, but the tight feeling is better. The feeling of tightness, like a huge band was squeezing my feet and ankles is better. I am not familiar with medical terms, so there is so much I don’t understand about this. I am just doing everything I can to get better. My overall health had always been excellent until this thing jumped on me. I will keep you up-to-date on my appointments at Mayo. About Mayo. I can’t say enough about the staff and clinic. They are all top notch. They are always pleasant, courteous and helpful and they taken you in at your appointment time. I wouild like to go there for my primary care, and I just might do that. It is a 160 mile drive from my home.
I have MGUS with peripheral neutopathy. I have M Protien. I found out about 4 year ago when I went to my primary physician because I was having difficulty walking and a little problem with balance. She sent me to a neurologist and he did the shock and needle test and ordered some blood tests. The blood test revealed the M protien. The level was just .2, but that little bit was really doing a lot of damage. Not sure what the protien level is now, but about three months ago it was .7. My Dr. tried a steriod and that did not help at all. All that was being done was blood tests periodically. I was told there was no treatment. I take Lyrica for the nerve pain and Provigil for exhaustion. I read on the internet that Mayo was doing a clinical trial using Rituxin for MGUS related neuropathy. I called and make an appointment and was approved for the trial. I have had four infusion of Rituxin. The last infusion was about a month ago. It seems to have helped a little. I still have difficulty walking, but it seems that I have a little more feeling in my feet than before. I go back Oct 3. If I have improved or am the same, I will receive another four infusions. If I am worse, I will not be permitted to continue with the trial. I am very hopeful that this will help me and others out there like me. I think Mayo is still taking volunteers for the trials which are being held in Jacksonville, FL (where I am going), Tucson (I think), Arizona and Minneapolis, MN. The drug company furnishes the Rituxin for free. I am counting on Medicare and my insurance to cover the rest. I might have some out of pocket expences, but I don’t think it will be very much. It’s 4:40 a.m. here in Florida. Couldn’t sleep, so please excuse if some of this doesn’t make sense.
From my memory of talk with top neurologist, Rituxin can affect a person’s ability to have children. It is used for adults over child-bearing and child-desiring ages. Check that factor out with your neuro.
Our son, with CIDP, is now 19. Onset was at age 12.
We have tried many different options: ivig, pp, Cell-cept, Avonax.
Of all, plasmapheresis enabled him to get out of wheelchair when he was 12 and back to walking independently. Avonax helped to restore some tingling in otherwise numb feet/legs when he used it for one year at age 17.
He is now only taking prednisone (since age 12) and is now steadily decreasing that in attempts to eliminate it.
Hope this information helps a bit.