I have had my first session of Rituximab in early/mid-April and have just had my review and (some of) my blood tests back. Good news that after 3 months my CRP is under 5 (was in the 50's before and my ESR 80's and my B cell data shows that the RA is being surpressed. (No ESR done .. a trainee took the bloods and did not take enough .. I did mention it at the time, but .. fell on stoney ground! However, CRP is indicative enough.) I was told by a nurse I would get my B Cell data given to me but a Registrar I also spoke to recently said that that information was no good to me really so all I need to know is that the B cells are being surpressed/Rituxi doing its job. Is this so all other fellow Rituxiambers - Do you get your B cell data?
Also I have found out since my rheumy clinic 3 monthly review 3 weeks ago that I now won't have an appointment till January? Guess she is thinking under 5 for CRP and all other routine bloods and B cells show Rituxi is working well after 3 months so leave her longer. Would like to have been put in the picture .. vague this time with the info they gave me.
I was under the impression from all I read and discussed before starting, that at this early stage I would have 3 monthly blood tests which I would prefer as if the RA starts to creep back sooner/B cells come back .. I need to have that proof to have the next infusions before 9 months, and also that nothing else is being affected in my blood .. which is actually spot on at the moment. Never had my HB level so normal. (Just under 13 .. usually hovers 11-11.5 but even that has been quite good for me.) I asked if I needed another infusion at 6 months instead of 9 if I started to feel bad, could that be brought forward easily and the registrar I spoke to this week said .. difficult! Not what I wanted to hear or was told prior to starting. Was told in April you can have your infusion brought forward if you start to experience difficulties as long as not done any sooner than 6 monthly intervals. I don't have much inflammation. I still do have a lot of knee/ankle joint pain when walking .. especially till I get in my stride (pain is damage done .. irreversable joint damage/tendons) but not like the hideous flashing pains/swellings all the time before starting Rituximab. I guess I am just not trusting knowing that I was left floundering last year with no meds protecting me for 4 months whilst waiting for biologic clearance/hospital communication breakdown.
Have other Rituxi people here had success after 3 months in bringing down the CRP/surpressing B cells and been put to 9 monthly infusions on that one set of blood results after 3 months? Would love to think that it could last till 9 months .. or even more .. I know some can go to 18 months .. but scared they won't accommodate me if I need it done sooner. Anyhow finally after two years something has brought down the inflammation. (My feet are so skinny all my shoes flop off! ) I can also see knee caps, for the first time in 3 years.