Rituximab dilemma

Karen3
Karen3 Member, NewlyRegistered Posts: 6
edited 1. Jun 2012, 13:43 in Living with Arthritis archive
hi there, I recently signed up to the forum because I need some advice and I'm interested in how other people deal with RA especially as I see that people have had similar experiences with the meds as I'm having.
I'm 51, and am at a stage where I have to make a choice whether to go back on anti TNF or start on Rituximab which I've been offered because the anti TNF was seemingly losing affectiveness. I developed what are pleurisy symptoms and a cold a couple of months ago which is why we stopped the anti TNF but mainly I'm back to normal now with no infections, nothing sinister on the CT scans and need to make this choice of which way to go. I have had the warning about Rituximab that it can set off an irreversible virus with fatal consequences and although it's one in a million, I'm reluctant to go for it until I feel I've exhausted other options.
Thanks to you Tilly for replying earlier, what you said was reassuring and it seems to me that the lack of evidence about these horrible side effects is confirmation that as you say it is a very tiny risk and has not been flagged up on any black list of meds. Hopefully the benefits would outweigh the risk. Is there anyone who has experience of being on it for years problem free? Thanks and a general hello to the forum, Karen

Comments

  • frogmorton
    frogmorton Member Posts: 26,574
    edited 30. Nov -1, 00:00
    Sorry Karen no experience :?

    But wanted to wish you lots of luck with your decision and any future treatment.

    Love

    Toni xxx
    Love

    Toni xxx
  • stickywicket
    stickywicket Member Posts: 26,173
    edited 30. Nov -1, 00:00
    I can't help either, Karen, but have you seen Tillytop's reply to your thread on the Helplines forum?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Karen3
    Karen3 Member, NewlyRegistered Posts: 6
    edited 30. Nov -1, 00:00
    Hi guys, yes Tilly's reply has made me think more positively about going for it. Thanks for your input too. I'll update as I progress with the idea of taking the drug which might be useful for others.
    Cheers
    Karen
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am glad you have found us. I am on my third anti TNF, none have worked as I would wish but my current one, humira, is as good as it's going to be. My PsA is well-controlled but it's now far too late in the day for anything like relief. I don't know much about rituximab apart from the fact that it works in a different way to the biologics so you never know, this could be the one for you. I don't think it's been around long enough for someone to have years of experience on it but all of these meds are finite in what they can achieve. It's not an easy decision - few decisions about this malarkey are - but I wish you well in whichever choice you make. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • julie47
    julie47 Member Posts: 6,142
    edited 30. Nov -1, 00:00
    Karen welcome to the forum from me too :D

    I am not on the med Rituximab so I cannot give any advice but I want to wish you well with your decision.

    Love Julie PF x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello again Karen.

    Really pleased my post helped to reassure you a bit.

    As DD says, I don't think Rituximab has been used for RA for long enough for information on long term effects to be known - but then the same is probably true of all the biologics. My understanding is that Rituximab was originally used to treat cancer (Lymphoma I believe) and I think has been used in that field for longer - but probably at a higher dose and I wouldn't have thought that side effect data from that field of use would be particularly relevant to us.

    What I can say though is that my understanding is that NICE guidelines now say that Ritux is the drug of choice for anyone who has failed on one of the anti-tnfs and I know that, at my hospital, there are lots of people taking it. I don't think that would be the case if there were problems with major side effects.

    Please do let us know what you decide and please keep us posted.

    Tilly xxx
  • Karen3
    Karen3 Member, NewlyRegistered Posts: 6
    edited 30. Nov -1, 00:00
    Hi guys, thanks for all your support. What I've decided is to play it safe and go back to the Humira just to see if it does any good before going with the Rit. (all these bonkers names)! After all, I only came off it feeling like it was not having the same effect as it had done for 18 months but that might have been because I was getting a chest infection and a heading for a flare up. So another try then, watch this space! I am more positive about the Ritux thanks to you and it will be next in the arsenal of drugs to try now I think. Have a good weekend and Bank Holiday
    Best wishes
    Karen
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