Rituximab?

Good morning to you all and hope this Friday offers something to make you smile. Has anyone been put on Rituximab after trying other biologics? I am on steroids to keep me sane until the appointment for the first does comes through. 6 hours in hospital.......but if it works hey ho. Any advice or shared experience to offer as I am feel alone with this  disease. Thank you. 

16 Replies

oldestnewest
  • there have been lots of posts on here about this drug recently.  If no one replies to your message then I am sure you can search for what people have said about it on here.

  • Thank you, it is so hard to stay hopeful after many drug failures, and meanwhile my joints just deteriorate! Despite some bad results I don't think I have any choice now! Cheers, Lesley 

  • Hi

    I'm about to start Rituximab - first infusion on Monday (eek!) - I've been on Enbrel for the past 18 months (with mtx, sulfasalazine and hydroxy) but the effect has gradually worn off and I've needed steroids to control the flares again. I'll let you know how it goes and I hope you get your appointment through soon.

    Good luck.

  • Thanks Harpey, I am the same as after Golimumab I am back on steroids to enable me to walk. Please let me know how it goes, I am scared. Good luck and I really hope it works for you. Warmest wishes, Lesley 

  • I've had two sets of this. I'm basically happy with it, the Drs check me between the roughly six monthly infusions. You feel better quickly mainly because they load up an antihistamine and steroid before starting the rituximab . 

    There doesn't seem to be the same frequency of dosage as other biologics so I think it's important to agree with your rhumy when you'll see them to assess things. Also I've found that there are strict rules about surgery. They like there to be a 2 month gap which (as in my case) can leave you untreated for a while. 

    Apart from that I haven't been more prone to infections, my inflammatory levels down and I'm looking forward to my next dose in three weeks time! 

    I've posted I think about what happens when you go in for infusion and am happy to answer any questions if I can!

  • Thank you Cathie and great to hear a success story. Did you have any blood tests prior to starting? I have been messed about a lot and want to make sure nothing is forgotten. Best wishes, Lesley 

  • Yes I had blood tests prior to every infusion. I think before the first and second one. They really do take care. It's 9 months since I had it and I'm really feeling the need now. Looking at that positively does suggest it was making me feel a lot better!

  • Yes I have after trying Humira. And Enbrel. Sorry to to say but nothing worked and straight after that I started spasms n memory loss etc and diagnosed Anti phospholipid syndrome so now on warfarin for life.Don'ty think they will offer me anything else.

    Someof these drugs work for some people n not other so I hope you get some relief.Good luck

  • I'm so sorry to hear this. There are other meds being developed all the time so don't give up. Hugs

  • Hey, I've been on Rituximab for over 6 years. The infusions can get boring but take a book and a bottle of water and it will fly by. 

    The thing that I love about Rituximab is it is two infusions and then you are done for 6 months to a year. 

    They will give you a dose of piriton and steroid when you have the infusion which can make you sleepy so you may need to arrange transport. 

    If you have any other questions just ask Emma :-)

  • I reckon I have been on Rituximab for about 3 years I go every 7months. As Purplecats says the infusions can be a bit tedious and I do develop a bad headache on the day. However that is the only side effect of note. My specialist nurse describes it as a steroid headache. Whilst it keeps the ongoing RA at bay it does nothing for damaged joints however.

  • Hi thanks!  I am about to start this drug soon and have heard great things about it.  I have only taken the usual methotrexate and stuff but they have stopped working.  I hated being on steroids all the time as they cause bone damage and my bones are not great anyway.  I spoke to a lady on phone who has been on rituximab 4 years and she said it had given her life back.  Sounds good!  Best wishes.

  • Yes, have been on it for nearly 2 years now. my next infusion due in June. I always have the 1st dose followed by the 2nd one 10 days later. You are in hosp nearly all day but it's worth it when it kicks in and you feel so much better. I have to balance it between working part time and looking after the grandchildren with school runs. It does make me feel drowsy and sometimes i may go a little red in the face but your obs are taken every half an hour. I only have this every 6 months but before when i was on Toc zilimab it was every month. 

  • Retuximab I'd really good stuff 

    Two infusions every six months 

    First one takes 8 hours. Second one two weeks later  takes 6 hours 

    Brilliant stuff 

  • Thank you, and great you are so settled with this. 

  • I've had one pair of infusions. For about three weeks. I was utterly exhausted and pissed off as I had been told that the fatigue would improve. But the , quite suddenly, I felt a lot better. I'm also on methotrexate and steroids (7.5mg), but I'm now weaning myself off the latter in Anticipation of my knee replacement. It will be about nine months between infusions by the time I get my next one, so I may need a steroid injection to tide me over.

    Enbrel had been quite effective for me, but I got too many infections . I kept having to stop the drug,in favour of antibiotics, and then the disease would flare up badly. Touch wood, I seem to be tolerating Rituximab well, and no infections. I do hope you do well on it . Jora

You may also like...