Geoff – Rituxan
[QUOTE=geoff_c_lewisuk]…so then i was given Retuximab over the same period and was told it would help over a a few months. now almost 12 since i was given it.
i slowly felt stronger my energy improved and balance, but eventually i reverted back a little and I knew the condition was progressing again.
ive had no further treatments since for about 6 months but my anti mag has now come down and medically i should be improving but symptomatically im getting worse.
i can now only walk slowly and only short distance and standing up for long is not good, also get tired quickly and suffer with fatigue.
they are now discussing another course of retuximab
Allaug is the greatest. Glad to hear that she contacted you.
With regard to your treatment with Rituximab, there are a number of papers written regarding trials of Rituximab on patients with the same condition as us. From those papers, and from my own experience as well, the Rituxan can take up to several months to show effects. There is a half-life of about 20 days for Rituxan, so that the infusions will eventually slowly die out. Of course, if there are still rogue cells producing the anti-MAG, then the disease will start to come back. My understanding is that this is a chronic illness, so we are stuck with it and will probably have to continue to monitor and treat as necessary. At least, I have not heard of anyone with the IgM MGUS being able to cure it once and for all. The discussion on the part of your doctors about repeat Rituxan treatments makes a lot of sense. I had three more treatments about 6 to 9 months after the initial four in a row. And Norb has just completed a second series, this time with double doses. (Norb, pls correct me if I am wrong).
Anyway, I have my own theories on the relationship between treatments and results. I feel that there is usually a delay between treatments and results because you are dealing with biology – half lifes, huge quantities, an internal war of cells battling it out. Then too, I find that if you are already numb, it is hard to notice whether you are getting better or worse because you can’t feel anything! You have to look for the small indicators, like suddenly being able to do buttons up, or feel wood that I just sanded, or walk on my heels again. The pressure you mention, often referred to “stocking and glove” was right up to my knees at one point but now occurs only infrequently in my feet only up to the ankles. These were some of the indicators. Actually now there is no numbness in my hands at all – touch wood (sorry for the pun)!
Another thing I noticed before treatment was that my gait changed and that meant that I was using different muscles to walk. Then my achilles seemed to get sore because I was walking differently and not exercising the ankles. So, after Rituxan, I started running again, albeit slowly and not far, in order to strengthen the ankles. That worked and now I can come down the stairs in the morning without hanging onto the handrail for dear life.
You are lucky to know that your anti-MAG levels have come down. I can’t see how any further damage could occur while the levels are down. Are you seeing a physiotherapist to help with recovery? Maybe something like yoga classes or an excercise program could provide some benefits.
Keep working at it and don’t give up, Geoff. You’ll get it under control.