Diagnosed approximately 6 years ago. Have been receiving IVIG for 2 1/2 years. I have recently received Rituxan for the 3rd time. It seems to stabilize things for on average 2 years. Does anyone else receive this as part of their treatment?
I know what you mean about differentiating between practise and improvement. My typing is down to one finger on one hand, and the spell checker corrects all my keying errors.
As an engineer, I have devised my own tests for balance and dexterity which are more controlled than those used by the medics. Even so they are subject to variation, so I do not use them often, so that familiarity does not affect the results.
I’m sorry to hear that you had so much trouble with Rituxan, Linda. For sure it can be dangerous if it is not administered properly. If you go to the Roche website and inquire about Rituxan, there are many pages on how to properly administer it and what to watch for. In my case, the Rituxan was given at a special clinic for Rituxan, IVIG and other chemotherapy drugs requiring infusion. The clinic was owned and operated by Roche and the nurses were well trained and extremely attentive. The clinic was located in a doctor’s office so that there was always a doctor on staff in case of need. The nurses checked pulse and blood pressure every half hour to watch for side effects and in case they saw something, they slowed down the rate immediately. Before the Rituxan was started, I was given solumedrol, benedryl and tylenol to lessen the chance of a reaction and to avoid feelings of illness. So all 7 infusions I went through were very smooth – especially the one where they goofed on the calculation and it took 8 hours instead of 4. 🙂
Linda, perhaps the hospital where you were given the infusion did not understand the correct procedures for infusion of Rituxan, and maybe it would go smoother at an alternate facility.
I should add though, that while Rituxan can be particularly effective for treatment of IgM MGUS, I am not so sure that it is that useful for other immune system diseases. Do you have the same IgM MGUS that Allaug, Norb and I have? I often think that what we need here on the forum is a separate sub-forum for “Variants” or MGUS, same as for GBS versus CIDP in order to reduce confusion. Although the neurological symptoms can be the same or similar, the causes and treatments can be quite different. Just thinking out loud.
As my scottish uncle used to say…”bash on”.
Congratulations on the Rituxan treatment! From everything I have read in connection with treatment of MGUS IgM, the drug seems to have positive effects. I also read your web site which was really interesting and informative. Most of all, it highlights to me the need to do things as quickly as possible because there seems to otherwise be no way of stopping the relentless nerve damage and progression of the neuropathy.
I am still leaning towards enrolling in the Mayo clinic trial even though it means almost commuting between Toronto and Minneapolis. It would at least cover two series of injections (approx one year) before I would be subject to costs of about $30,000 per year.
You know all those wonderful things you hear about the medical system in Canada? They are true if you drive drunk headfirst into a wall on a motor cycle…but forget about medication for IgM MGUS.
Let me know what the side effects are like with the Rituxan (if any). I am most interested to hear. Also, how soon you can notice any improvement. Good luck with it, Norb. I sure hope some sensory nerves recover.