Hi everyone,
I've not posted for a while, I was originally on Enbrel, that didn't work so switched to Humira which again didn't work.
My rheumy has now placed me on Rituxan together with an infusion of
cyclophosphamide. I will have the infusions on tuesday and Wednesday
this week. Apparantly i am the only one in my primary care trust to try
this combo as I cannot tolerate mtx.
Has anyone ever tried rituxan? i've heard if it works it should be very
effective but as you can tell i am slightly pessimistic as nothing has
worked so far.
Any comments would be appreciated.
Lorna
Hi Lorna,
I have just gone through my second round of Rituxan infusions. The first round I was on Cyclosporine as well. I developed an allergy to the Cyclo so now I take Sulfasalazine as an adjunct to the Rituxan.
I have had success with the treatment BUT, it doesn't kick in for me for 2 to 3 months. I recieved my last 2 infusions in the beginning of April. It is only in the past week that I have started to see relief. My RD has given me systemic pred shots to tide me over.
Anyway, the feelings of exhaustion and stiffness and pain in just about every joint are starting to abate. I have noticed a big difference in just the last week or so. I was about to give up and beg for another shot when it finally kicked in. So hang in there, it can take a while to kick in but when it does, it makes a huge difference. I am feeling better than I have in a long while.
It is such a relief to know something can help as I have developed allergies to all the other DMARDS and TNF inhibitors. Until Rituxan came along I really thought there was nothing else they could do for me.
So don't give up Lorna, just try to be patient. Please keep me posted on what happens.
Good Luck
Thanks,
Not really, I have minor reactions when I take it so they monitor me closely. All is well unless they speed up the infusion, whenever we try that, within 5minutes my throat starts to close up. But they have pred IV and Lorazapam IV (which causes the spasm's in my throat to stop) at the ready so I am not to worried about it. The problem is that at the rate I tolerate well it can take 9 hours to get in me. So we try to sneak it up just a bit in order to get me out of there, mostly because by the time 7 or 8 hours have passed, I just want to go home. I feel really wiped out and hubby says I look like a vampire I am so pale when I get home.
But usually after resting for a day all is well (at least from the infusion). Then you just have to wait for it to kick in.
Since you only have to have 2 infusions 2 weeks apart every 6 months its not so bad. Would hate to have that long infusion once per month like Remicade, which BTW, worked really good for me until I got a reaction that was really bad after I had been on it for a year. I had a lot of relief during the year I was on Remicade.
well I have had my first infusions of cyclo and rituxan, i was extremely sick after the cyclo vomiting every half an hour which wasn't pleasant, they gave me a drug to stop the sickness but I am still feeling very nauseous 3 days later.Lorna,
Glad you are feeling better. It's interesting to me that they gave you cyclo infusions along with the Rituxan. I took it in a pill form twice a day and I didn't see any problems with it, until I became allergic after about 6 months in.
You might want to ask your RD about taking it that way in future. I'm sorry it made you so sick. That doesn't sound pleasant at all!!
Lorna I sure hope it works for you. Hopes up and fingers crossed!