Saw Rheumy. Seems the abatacept doesn't suit me so he was very helpful, so new plan : continue with the radiotherapy on hands, stop abatacept and start Ritiximab . Continue leflunomide and re commence mtx and folic acid . Blood work next week.
So whose on Ritiximab and can tell me about it , how often you get it and did u have any infusion reactions ? etc, thanks In advance A xx
Hi, sorry abatacept not the one for you, it's so gutting when you hope so much. I had rituximab as my first biologic, because I was enrolled in a trial. Basically, you have 2 infusions 2 weeks apart. Each one takes 6 to 7 hours. You are given antihistamine and steroid drip before they run the infusion proper. It's a long day, you need to take things to do, some hospitals feed you, mine was good.
My first duo of infusions were ok, felt tired the next day, and had some tingling during the infusion, feet , hands , and arms. It lasts at least 6 months.
Unfortunately, I had a bad reaction on the next run, almost as soon as the infusion proper started, I had the tingly feeling, told the nurse, and within a few minutes I apparently turned chalk white, and nearly passed out. That was it, no more rituximab for me. The up side is that it demonstrated how well you are monitored throughout the infusion.
I do know other people who have done very well on it, so I do hope that it works well for you Good luck with it! M x
Hi Allanah
Sorry to hear you are having to change drugs but you know what they say "as one door closes........."
I've had 12 cycles of ritux, only had mild reactions like itchy throat and ears. I once needed the infusion pausing for IV antihistamines and hydrocortisone then it was restarted. You absolutely must tell the staff if you get any symptoms straight away! Get your hubbie to take you first time, you need someone to drive you. The second infusion is easy. The B cells are gone by then and therefore it's quicker and easier. you can take something to read or an iPad/kindle. I usually nap in the afternoon. The IV methylpred tides you over until I kicks in. Literature says 2-16 weeks. My rheumy said up to 12.
Hope it goes well
Lots luv KiKi x x
You know I know pretty much diddly about biologics Allanah but I truly hope this new mix is the one that gets you to the best place yet. x
Update, another change of biologic 😑
Change of brand of meds
change of pain relief.
Good news for a change
should i change doctors?
