Rituximab repeat infusions and B cell tests - a couple of questions for you, please.

[NeonkittyUK]

A question or two to experienced Rituximab-ers, please. Thank you to those who replied before when I first had my duo in April. Your help was fantastic and put my mind at rest. This week is my routine review tomorrow but they did not do B Cells in October for my previous bloods review and the rheumy nurse said something then about them coming back a bit, but my ESR and CRP still very good but said they probably would not do them again until a year had passed by?? So that means I had them done in April twice .. before and after infusions and in early October. Don't they need to test B cells every three months or is it done six monthly after a certain time?

I wondered what is the norm for testing B Cells as one rheumy said they didn't alway tell them very much??

(I haven't had tell tale signs of swelling/red hot joints of other out of control RA symptoms .. my fingers are always the first to puff up but have behaved so far.) I did feel late November there was evidence of things feeling in decline a little but had a cold so thought it was a bit of a flare. Still can't make my mind up as the cold gave me a lot of painful joints and stiffness. Then I got a flu virus in December which lasted three weeks. Will find out my latest bloods results tomorrow.

Next question ... do you find your repeat infusion time settles down to an average length or can it vary? .. I know it says on literature the average is 6-9 months and I have gone nearly 10. The thing I find hard to handle and mentioned this before is that you seem to have to go downhill on this med before the hospital take notice and you are then left waiting to get a slot for the infusions which can take up to six weeks. I hope I will never be left in a state of being between meds with nothing to cover me again. That took me so low last year, and I cannot express enough how bad it was. Do you generally follow a pattern or can some people be six months one time then nine months the other? I know a couple of my rheumy's patients have gone 12 months which is more rare but excellent for them.

I also read that the second duo pf infusions work better. Is this so had anyone found? Do the B cells deplete any quicker on a second duo of infusions? Sorry if this sounds daft but it was something I heard and thought strange.

Many thanks, as I know I won't get much chance to discuss the med tomorrow as there are other things such as podiatry and blood tests to talk about as priority.

NK

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Hi neonkittyuk

Great to hear you are doing well on RTX!

I am a veteran with 12 cycles under my belt and happy to share my experience but obviously this is only my story and I have no way of knowing if this is the norm. I've not met any one else who has been on it as long as me.

I'm in England and I have my bloods done at clinic when they are deciding I need re-treating. Then when I get a date to go in to the Rheumy daycare unit I have bloods done again just before the infusions. I go back 2 weeks later for infusion 2 and again have bloods done before the infusions. I then go back to clinic 14 weeks post Rituximab cycle ( from the date of the second infusion). I then go along my merry way and hope that I don't need to go back for a good while. I have kept a log of cycles of Rtx and how I've felt etc and could see after a few that my optimum wait in between was 8 months. I once had a huge flare because I went 10 months ( it was Xmas and new year and the unit was closed and the there was a waiting list). I told my consultant and he said "let's treat you every 8 months then" and that's what's happened.

But I can imagine some people have to flare before they are listened too. B cells start to return 4 months after Rtx but shouldn't cause any problems until in significant numbers. As you probably know the minimum wait between cycles is 6 months.

I have never heard of the second cycle working better than the first?

See how you go and make some notes about your first cycle last April and when you feel ready for another contact your Rheumy. Add to those notes when you have your second cycle and over the years you may, like me, see a pattern imerge.

Hope that is useful. Pm me anytime.

Kiki x

[jaxx1]

Hi Neon kitty , I have had 3 lots of Rituximab over the last 3 years and feel about ready for my next,last ones were March/April 2014. I have only ever had the blood test for the B cells before each infusion, the rest of the time I just have the normal RA bloods done every 6 weeks,and I think this is because I am still on Leflunamide.

Yes I do think successive infusions work better,although I have only had mine annually,the first 2 gave me a good 6 months but this third one has lasted well for about 9 months,good wishes ,

jaxx

[NeonkittyUK]

Thanks Jaxx and Kiki .. will reply tomorrow .. long day! I got some more infor today as I saw the main consultant and thank you for your helpful comments. NK xx