Rituximab

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Sherry777
Sherry777 Member Posts: 3
in Living with arthritis

Hi. Anyone taking this infusion? I have been on it for a few years and found it worked really well. I didn't take it for a while as I felt ok but then COVID came and I started getting flare ups but was unable to get my infusions due to the virus hitting NHS so I have been getting quite bad again. I am hoping to have an infusion soon but wonder if it will work this time. I am really quite anxious about having it as I know it has its dangers, particularly with people who have had cancer. I really just want to know if anyone else has had a long break from it and how it was going back on it again. My doctor says RA is progressive and if I don't have Rituximab it will just get worse. I take methotrexate but it's pretty useless at stopping these flares. Just would like to hear of anyone on Rituximab as I rarely meet anyone on it.

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  • frogmorton
    frogmorton Member Posts: 29,443
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    Hi @Sherry777

    Not on this medication myself, but have found you a thread to read while you're waiting for someone who is:

    https://community.versusarthritis.org/discussion/51142/rituximab

    take care

  • Ottersriverbank
    Ottersriverbank Member Posts: 2
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    We would also like to hear anyone's experience of rituximab infusions. Methotrexate was stopped as possible reaction, leflunomide started after a break with just steroids, but my husband has RA associated interstitial lung disease (ILD) and rituximab is reckoned to be good for this as well as RA, but it has been delayed for months due to COVID and he has steadily deteriorated so he can barely walk and is very poorly. His feet and ankles are so painful and stiff which means he doesn't do much in the way of exercise or anything else for that matter, which is so different to our lives before all this started. I despair of him ever getting even a little bit better. We are concerned that he has been on high dose steroids all this time as well. I am a full time carer now and getting up all through the night as well, as he cannot move quickly enough to get to the loo and his hands are so bad he cannot manage on his own. Any encouragement from anyone on rituximab would be so welcome as we feel rather isolated within the illness, let alone necessarily so due to COVID

  • chrisb
    chrisb Moderator Posts: 682
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    Hi @Ottersriverbank

    Welcome to the Versus Arthritis forum.

    I see that your husband has RA and is suffering serious symptoms despite taking Leflunomide. You’d like to hear from forum members who have experienced rituximab infusions.

    You may find the links to our website helpful:

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/rituximab/

    You mention that your husband is struggling to do much in the way of exercise, the exercises here may be manageable for him:

    https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/exercises-for-the-toes-feet-and-ankles/

    I hope that you receive some useful feedback from forum members and that the delay in treatment due to COVID eases soon.

    Best Wishes

    ChrisB (Moderator)

    Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Tuddy
    Tuddy Member Posts: 6
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    Hi ottersriverbank

    Just joined and like you looking for comments on retiximab

    Your husband seems to be going same route as me. Methotrexate stopped when I had a chest infection in February and later docs queried covid even though many tests were negative. I am suffering with feet and ankles but my symptoms are not quite as severe though my wife like you is at hers wits end so you have our heartfelt sympathy. I am lucky that I am having my infusion next week. It was delayed as I needed an angiography and possible surgery but having the less intrusive option of stents.

    Hope you get improvents I will let you how it goes on with infusion, very nervous but seems the only option

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