I am only aware of anecdotal cases outside Norway where there has not been a response to rituximab and it would, of course, be interesting to know about instances where there has been a positive response
Dr Bansal did not quote any numbers and we were left with the impression that, quite sensibly, the when, where and how of a UK trial is the subject of on-going discussion
I did not get the impression that he felt that there were any robust clinical or biolological markers that could (in the present state of knowledge) separate people who were more likely to respond to rituximab and those who were less likely to respond
Rather concerning anecdotal reports from elsewhere:
(1) The Open Medicine Clinic is providing Rituxan for patients all over the world. I just finished my treatment with very little/no response. Very disappointing, but I felt I had to give it a try. It is very expensive, but there is a pretty good program to help with medication cost if your income is at a certain level and you can prove your insurance won't cover it. Even with the medicine free, the visit is $1500 to $2000 each (x6) plus hundreds of dollars of blood tests. I know there are certain infections they test for before you can go through it, I don't know if Lyme is one of them.
(2) swollen throat
Not Sore. swollen. Maybe swollen bfore rtxn but much worse after. , it's been 8 months on rtxn and over two months since last infusion.
Causing (worse) apnea. Had a home sleep study and apnea is significant.
Anyone else? Any ideas?
gargle with salt water helps the swollen throat a bit.
This seems to help as well:
http://www.1cascade.com/ProductInfo.aspx?productid=4333
Will try this next:
http://www.1cascade.com/ProductInfo.aspx?productid=2726
"Red root is a lymphatic stimulant useful in tonsilitis, sore throats,
swollen lymph nodes and fluid-filled cysts. "
Any problems with these? If echinacea stimulates immune sys, bad idea aftr rtxn?
bad sleep
6/12
Pre-rituxan I used to usually sleep through the night, at least the majority of the time, even if not the same quality of sleep as I got pre-CFS. I haven't slept through the night once in the 5.5 months since RituxanIt's getting to be a pretty bad situation. I wake up a lot, and often can't get back to sleep after only 4 hours. I'm really sleepy during the day. When I don't actually wake up, I almost always toss and turn and sort of "half wake up" all the time.
D Ribose didn't used to affect my sleep, but since Rituxan, if I take it during the day (last dose way before bed time) or even in AM only, I lay in bed in a kind of half sleep state where I can't get all the way to sleep.
I had mild sleep apnea before Rituxan, and tha'ts gotten worse. But I think there is something more going on here as well given the "half sleep" (worsened by sugar).
There was a change immediately after Rituxan.
9/12
(update- been 8 mnths and slp a bit better BC of no sugar/carbs for 6hrs bfr bed). But still nt good. Apnea worse.
Curious if anyone else has noticed this?
CFS also wrse
I can't talk. Can't type/text enough to communicate. Haven't had a conversation with someone in 8 months...