Rituximab

[285641]

Hi everyone new to this site but sooo glad I found it ! I've had RA for twenty odd years now, on hefty load of drugs but now they want to put me on biologicals as the triple therapy isn't really controlling it now. Wondered peoples thought's on Rituximab ? reading about it has really spooked me and am in the not sure what to do stage ! I had a BCC after being on Humira so that's putting me off as well I know drugs act differently from person to person but any thoughts greatly appreciated.

[rawillbebeaten]

Hello,

I was on another biological Enbrel From 2002 until Jan this year. Things were not going well with inflammatory levels and I was switched to Rituximab. I had heard lots of good reports, including from my Aunt who is 78 and has had RA since she was 12. It appears to be working well for me especially as far as ESR and CRP levels are concerned. The possible side effects are scary but like every drug you may have none at all

I had some strange pains in my feet shortly after the first infusion, this is an on going problem, but eventually it was decided that they were part of the RA flare and I have now had a 2nd course of the full 2 infusions. My RA is very aggressive and erosive so I'm glad I'm having another heavy weight drug into go into the arsenal. Before Enbrel I could hardly move. Things are improving slowly and I'm confident Rituximab is part of that.

Wishing you all the very best, you have to do what's right for you, but also trust the health professionals who won't recommend such an expensive drug if they didn't think it was needed

Thinking of you at a difficult time

Michele

PS I don't know what a BCC is so have ignored that point!

if it's a blood clot then there is a risk every time something is put into your body via a cannula, but there are signs to look out for

[285641 in reply to rawillbebeaten]

Hello Michele, many thanks for your positive msg. Good to know it's working for you, especially after having one that didn't, it's all trial and error isn't it. My problem really is that I feel ok, I'm on a triple therapy of Sulphazaline, Prednisolone and Leflunomide plus Methotrexate injections, and cope ok apart from mornings and over doing it, but I still get inflammation and fluid round the joints and my rheumy nurse thinks it could be better controlled. I saw consultant this time last year who halved my Leflunomide as I was ok, this sent me on a downward spiral until just before Xmas when I was given steroid injection to damp it down but ended up in bed with a full on flare up on Xmas eve ! so I really don't want that to happen again! maybe the way forward is to postpone until the new year and re access my situation then. Good to know you think Rituximab is part of your good progress and long may it continue, I appreciate your input so thank you so much for taking the time to reply, I am reassured by your words. A BCC is a Basel cell carcinoma, a type of skin cancer that thankfully was caught before it became scary, I was on Humira at the time and had to come off it because of it, other biologicals were out of the picture afterwards as well but the Rituximab works differently so they say its safe for me.... we'll see !!

Many thanks once again

Chris

[AgedCrone in reply to 285641]

I have had RA for 17 years & had a BCC & breast cancer a few years back..........I had my first RTX infusion on Monday!

I was not enthusiastic about going on Biologics but you get to the stage where the pain is just not bearable.

I don't know how soon side effects show up, but so far I am fine & going back for second infusion in 10 days.

I guess we just have to take the advice of the Rheumy & try to ignore all the horror stories of side the possible side effects.

Good Luck whatever path you take.

[285641 in reply to AgedCrone]

Hi glad to hear your infusion went ok and no side effects, hope all goes well at the next one and you get some relief from the pain.

Yes good advice, best to ignore the nightmare stories as we're all different hey ! nothing ventured nothing gained as they say.

Thanks for your reply and good wishes

Take care

Chris

[AgedCrone in reply to 285641]

Thank you....I'm still walking on eggshells, but have decided to forget all about side effects ...only my hands are playing up at the moment, so almost all is well in my world at the moment.

I spoke to a lady today who sat next to me when I had the first infusion.....she was having the same & she is doing well too.......

AC

[285641]

Hi AC Good to know, great to hear positives thank you. I too have decided to ignore side effects but still a bit concerned as to infections but we're at risk anyhow really !

Keep well and fingers crossed it sorts the hands as well

Chris