Any information about Treatment with Rituximab, Tocillizumab or Etanercept?

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Any information about Treatment with Rituximab, Tocillizumab or Etanercept?

I live in London and am not responding to treatment using methotrexate (25mg) a week or Hydroxcholroquine sulphate (200mg) daily. I continue to experience flares with the last and worst one in April lasting 10 days. I had a steroid shot which helped but won't last long and I can feel start of another flare.

I have been offered biologic - Benepali or STRAP trial and randomised treatment with one of three biologics- Rituximab (infusion) Tocillizumab or Etanercept (both injections). I have agreed to trial as I feel I have to take a chance and that it may work for me but also scared. I know the risks but know the health professionals will support me. Any information and advice very welcome. Thanks

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  • Posted

    Hi Shabina, I think it’s normal to be scared.  No medicines should be be taken lightly and especially not these, including methotrexate. However, it’s a risk/benefit situation and you’ve been in a lot of pain which is debilitating. I’ve been on 2 biologics and I’m currently on Etanercab which is working reasonably well for me. I was on it with methotrexate but had to stop mtx due to side effects so I’m using prednisolone which I’m trying to reduce. I do prefer the weekly injections because if I have to stop, say because of a chest infection and antibiotics, I feel I have more control over stopping and starting again. Just something you might want to think or ask about?  I’m sure you’ve been told you can come off the trial any time if you should want to?  What’s your alternative? If you don’t go on the trial are you being offered a biologic anyway?  Just don’t be pressured. The trial is your choice.  Regarding the biologic though, yes, they are another pretty toxic drug (as is mtx) but I could feel the difference very quickly (I was told it could take up to 3 months)  and you are monitored very closely.  I’m sure you’ll read  other useful suggestions to consider on here also but good luck.  Best wishes.  Carol
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  • Posted

    Hello

    Reading your post as we all read each others posts on here is just a constant reminder of what RA does to us.

    But we have to deal with it the best way possible. For me its 15mgs of MTX weekly, one humira injection fortnightly (self administered) an anti inflamatory every 2 or 3 days diclofenac in my case and this mix keeps my levels good but doesnt do a lot for the pain.

    So i do take a fair few painkillers on a daily basis to keep that at bay. I work full time in building trade irs not easy but keeping focused on something else takes mind off pain and discomfort, and for me thats the crux of it. I do hope you can find the right mix of meds both herbal and medicinal that will help you. I know its a constant battle iive had it for 18 yrs im 60 now. Its just a case of never letting it beat you, it wins a few of the battles but with the right mindset you'l win as many back. Take care and stay well

    Regards Gaz

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  • Posted

    hi shanbina i am going for infusions tmorro rituximab and looking forward to it believe it or not i cant take much more pains in my hands and ankles also take 25mg mtx have done few years now am ok with that..can anyone tell me if they benefit from gettin infusions would like to hear from anyone 6hrs i have to sit first sitting 😢👍👍

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    • Posted

      Hi Bob.

      The only suggestion I can give you is take something to drink and a tablet/book. Not sure if you will be in a recliner or bed but snoozing helped me through it. I know people who took food in as well. I hope you will feel the benefit soon.

      Just wondered if you have been taking Hydroxychloroquine daily along with your weekly Methotrexate?

      Amazing how many treatment options there are for this one disease.

      It would be good to know how it goes tomorrow.

      Best wishes.

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  • Posted

    I have been on all 3 of those biologics, initially by infusion with rituximab but then weekly injections until they stopped working. I am now back to having monthly infusions of toxilimab which appear to be working. Are you taking folic acid along with the methotrexate? As everyone has said you need to weigh up the choices you have if they find a treatment that reduces your flare ups/pain. I have never had any side effects from any of the drugs but I may just be lucky. I have had no flare ups for 2 months now and feel very fortunate. I would ask what plans there are if you don't want to go on the trial. These are all standard treatments for RA now.

    I hope that you get some improvement in your condition whatever you decide to do.

    Best wishes xxx

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  • Posted

    I have the Rituximab infusion every 2 months.  For me, the 3 hours that I'm in that chair is nothing compared to being in pain.  I have no side effects.  I take a book in with me and a milkshake and after a bit, nod off to sleep.  If you are in pain, I would recommend the infusion.  It has worked for me for 4 years.  I have no experience with the other biologics.

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  • Posted

    Hi, I was on Infliximab ( Remicade) for a year and a half, worked really great, with no side effects until it stopped  and than I was put on Abatacept ( Oriencia) and have been on it for a year and a half. Both are in fusions. For Remicade the infusion takes 2 hours and I went every 6 weeks.  The Oriencia infusion takes 30 minutes and I go every 4 weeks.  For me Oriencia worked the best. I was able to get off all pain medication and prednisone. I am sad now and concerned that I have to get off Oriencia because  after a year and a half of being on Oriencia I have developed Psoriasis and my doctor says I have to change to another biologic.  This drug, Oriencia, gave me my life back, I was back to normal, no pain, being able to do anything without flares or pain and now going to another biologic I just hope I have the same outcome but the Psoriasis is causing lots of problems and it has to go away. 

    Good luck I hope this helps

     

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  • Posted

    Hi Shabina,

    I too was on 25mg of

    Merhotrexate and 2 x 200mg of Hydroxychloroquine. They didn’t work and my flare ups Were so bad I could barely get out of bed and could not even get downstairs in my house.

    I’ve been on Benepali injections for nearly 2 years now and it’s worked a treat with no side effects and I went white water kayaking yesterday! smile

    Good luck with whatever you decide.

    S

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