Rituximab

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Gerry1912
Gerry1912 Member Posts: 5
edited 31. Oct 2015, 08:25 in Living with Arthritis archive
I'm due to have an infusion of rituximab in 2 weeks times but having read all the side effects, especially about brain and spinal cord, I'm feeling rather scared and not sure what to do. Does anyone have any experience of rituximab?

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Dear Gerry1912, welcome to the Arthritis Care Forums.

    As mods we are here to help with any problems you may have using the forums.

    There are many lovely people who use the forums with a wide range of experiences in regards to having and living with arthritis. Have a good look through the different forums and pick the ones you feel are best for you.

    Best wishes,

    ModEm :skull:
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
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    Hi Gerry, I`m sorry I can`t help with your query on Rituximab, but it may be that I am switched to this next month, now that humira is not doing its job efficiently any more.

    The side effects are indeed scary - my rheumy nurse talked me through them. I found the thought of humira scary eight years ago, but found myself in a position of Hobson`s Choice, and went ahead with the drug.

    All side effects are, of course, potential - but I`ll look with interest at any replies you have.
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    I took Rituximab about 4-5 years ago, the only side effects I had after the infusion were a slight bad head and just feeling very tired, all of this went away after 48 hours.

    The side effects are just listed as a possibility, which for the ones you have listed are extremely rare for the dose given for Arthritis. Try not to worry about them and let your doctor/nurses know about your concern so they are aware.

    During the infusion you're closely monitored. You're usually given a pre medication on the first couple of infusions to help if any reaction were to occur.
  • Jackie47
    Jackie47 Member Posts: 108
    edited 30. Nov -1, 00:00
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    Hi
    This could be my next form of treatment. I'll be watching closely how you get on and wish you well
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    hi Gerry , been on Rituximab since feb this year , would not worry to much about the side effects , dont think they have had these problems in the UK but talk to your Rheumy nurse if you are worried , the drug works very well ,

    worst thing about it is how long the infusion takes , I have not had any side effects from it
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    The side-effects have to be listed to protect the manufacturers from any legal troubles but bear in mind they are only potential side-effects. I have taken a wide variety of meds for my PsA and apart from two have had no trouble at all: leflunomide gave me splendid headaches and Enbrel upset my liver (as shown by my regular blood tests) - neither bothered to tackle the disease.

    My view has always been that what matters is the quality of life now and the meds help to improve that - which reminds me, it's meth day so I'd better go and inject! Good luck, I hope it does what it is supposed to do and things improve as they have for others. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Gerry1912
    Gerry1912 Member Posts: 5
    edited 30. Nov -1, 00:00
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    Thank you for all replies received so far. It is good to know others are in the same position and I'm not on my own.

    I would like to ask trepolpen how long the infusions did last for and if the second was quicker?
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    first thing they do is a check to see if you are fit to have the infusion & put in line for the infusion , then they do a steriod infusion which takes 30 mins & will start rituximab 30 mins late

    they start it very slowly at first & after 30 mins do blood pressure check & increase & repeating checks every 30mins , the rituximab takes around 4 to 4.5 hours & they will keep you in up to a hour afterwards to make sure you are ok

    the second infusion is quicker by about 30 - 60 mins
  • Gerry1912
    Gerry1912 Member Posts: 5
    edited 30. Nov -1, 00:00
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    Thank you very much for replying.

    I'm due to have the first infusion next Wednesday so will let people know how I get on.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I loved having the infusions of infliximab, it was a very social occasion with other patients to chat to, tea and biscuits provided by the hospital and a good excuse to sit around for a couple of hours doing nothing without any guilt. Good luck, I hope it goes well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    Hi Gerry , hope the infusion went well , it takes a very long time but the next one will be a bit quicker , the drug works very well for most people & within a month or so you should start to feel the benifits from it

    had my last one in July so will be the new year that I am due the next infusion , please let us know how you got on
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I too hope it went well and that you are feeling OK. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Gerry1912
    Gerry1912 Member Posts: 5
    edited 30. Nov -1, 00:00
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    Thank you so much for your support.

    It was quite a long day. It had to be stopped once because my ears became itchy and went bright red!!! I looked a picture! Once resumed all was fine. The staff were brilliant and they looked after us really well. Thursday I had a woozy head which got better during the day but yesterday I had a splitting headache which got worst as the day went on and I felt unable to think clearly! My neck was also very painful. Today so far I just feel tried. I’d say 100% certain the itchy red ears were down to the rituximab but the rest I’d think was probably down to anxiety (or maybe a bit of both). Just relieved to have got the first one out of the way and that I now know what to expect next time. I’ll let you know how it goes – especially the ears! Also, of course, how it works.

    Thank you once again. It’s really good to hear of other people’s experiences.
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