Does anyone have experience of Rituximab?

Options
annic4363
annic4363 NonActiveMember5yrs Posts: 67
edited 3. Mar 2012, 13:45 in Living with Arthritis archive
HI there

I have active RA and as such have tried 2 types of Anti-TNF neither of which has really worked all that well. My Rheumy is now suggesting Rituximab which would be administered twice in hospital but once that is done then it could last up to 3 years.

To me this sounds like a wonder drug - I mean 2 days in hospital for up to 1095 pain free days? Why aren't we all getting it? I guess it's down to the cost but surely if all the steroids and anti-tnf and other drugs are taken into account it is a cost effective alternative.

Am I missing something? Has anyone who has tried it had any side effects? If you have tried it then how long did it last for you?

I need a bone graft op on my shoulder - nothing to do with RA! - and the surgeon wants me down to below 5mg of steroid a day before he'll operate. Thats another 7.5mg down which feels like a lot.

Fortunately I have a great surgeon and Rheumy so they are actually talking to one another despite being in different hospitals. So now the Rheumy is wondering if I should have the Rituximab BEFORE the surgery which is a change of plans. I think she is thinking it will be easier to get the steroids down if that happens.....

Sorry this is such a saga but I really don't know what to think and could do with the sage advice I always find here

Thanks in advance

Chat soon

Annie xx

Comments

  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -0001, 00:00
    I don't, annic4363, but I'm sure someone'll be around soon who does. Meanwhile, if you put 'Rituximab' into the search engine (top right) there a lot of info on Biologics, 2nd down on left.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lulubell69
    lulubell69 NonActiveMember5yrs Posts: 110
    edited 30. Nov -0001, 00:00
    A couple of years ago I had rituximab and it had no effect whatsoever. After that I went on to humira which is still working great, although I do have a flare up in my jaw at the moment. I have tried nearly all meds for RA and the only ones that work for me are the anti TNF.
    Good luck
    Lu
  • tillytop
    tillytop NonActiveMember5yrs Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hello Annie

    I am currently on Rituximab and will answer your post properly in a min - just about to be "turfed off" the "proper" computer :roll: so will get the laptop fired up and reply properly in a few mins.

    Tillyxxx
  • tillytop
    tillytop NonActiveMember5yrs Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hello again Annie

    I am sorry you haven't had success with the two biologics you have already tried and pleased that you may have the opportunity to try Rituximab.

    I understand your thoughts about Rituximab sounding like a "wonder drug" and your musings about why everyone can't have it but as you have obviously found, as have I and many others here, all these biologics have the potential to be life changing for some, for others (myself included) they can work brilliantly for a while, and for some people they do very little or nothing at all. Quite why that should be, I don't know but I suspect that is destined to remain one of life's little mysteries :lol: Although Rituximab has been around for a while for use in other diseases, I think it has not been used for inflammatory arthritis for very long. At my hospital it is now the "drug of choice" for anyone who has failed on a previous biologic. Whether that is in line with NICE guidelines, or just the way my hospital does it, I don't know.

    Rituximab is my third biologic and, so far, it is working well for me (although not yet as well as either Infliximab or Humira did). I had two infusions, 2 weeks apart back in May last year and, although at my hospital the standard practice is to have 2 further infusions after 6 months, my second lot have been delayed due to other health problems but I am still seeing benefit from the Rituximab. I have not heard of it lasting as long as 3 years - my consultant suggested that between 6 and 18 months was what they usually see. But I had a conversation at the hospital recently with a lady who had gone a year between infusions and was doing really well.

    You ask about side effects - so far I have had none, other than feeling pretty steamrollered for a couple of days after each infusion. And one of the added benefits is that they give you quite a substantial steroid infusion before each dose of Rituximab to minimise the risk of an infusion reaction. This is an extra help because Rituximab is not fast acting - apparently it can take up to 6 months to take effect although for me I began to feel the benefit after 3 months or so. And as I said earlier, my repeat infusions have been delayed and, although it is definitely wearing off now, I think that it probably will have been a year by the time I have my next lot.

    I am pleased that your docs are talking to each other - make things a lot easier doesn't it?

    If, when it comes to it, you would like any information about the infusion process itself, please feel free to PM me or to post your question in a thread and I will do my best to answer.

    If you do go for Rituximab, really hope it helps you - and good luck with the surgery when it happens.

    Tillyxxx
  • [Deleted User]
    [Deleted User] Posts: 0
    edited 30. Nov -0001, 00:00
    Hi Annie,
    I am currently on Rituximab. I started in November 2010 and so far had 3 infusions, every one after 6 months. I find it strange that you doctor told you the drug might last you up to 3 years. It was only after 3rd infusion that it started working for me... It definitely takes it's time and I think it's not likely to work after the first time, though I'm sure there are exceptions. I was initially told that it might start working after the second course (a year). When it didn't I was told to be patient. It did start working only early this year. I also haven't heard of one course lasting up to 3 years. I think a year or 18 months is the maximum. As to side effects, I didn't really have any, apart from feeling very tired on the day and great the next day, due to the bag of steroids pumped into my veins :D .
    I wish you all the best and hope that rituximab will work for you. If you need any more information about it, or the process, I will be glad to answer any of your questions.
    Take care,
  • Colin1
    Colin1 NonActiveMember5yrs Posts: 1,769
    edited 30. Nov -0001, 00:00
    Hello Annie
    Well theres not much I can tell you that Nesia Tilly haven’t already covered but ill let you know my experience. Gone through all the meds over the years but never done much good. I have failed on all the Anti TNF although one lasted about 6 months the others made me quite ill. I started Rituximab some time ago and I’m now awaiting my third infusion However I have a lung problem and they have asked me to waite 3 moths just to make sure its not the rituximab “ I’m going down hill fast and I pray its not the rituximab. My fist infusion lasted about 11 months my second 7 months. It worked with weeks for me and gave me a new lease of life. I was so bad with RA, PA FM I spent most of my time in a wheelchair. After having Rituximab I no longer use the wheelchair. I don’t want to give you false hope, whats good for one and all that. And I can get quite painful at time if I overdo things but it was sent by the gods I don’t know what ill do if I cant have it again. My rheumy says on average it lasts 10 months
    I have never had any problems but my overall health is poor, I have heart and lung problems but had them before Rituximab. Its going to be a long three month wait but I have no choice.
    Take care and I really hope it helps you the same way it did me.
    Colin
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE

Categories