I'm changing meds - off Enbrel and onto Rituximab

hurdygurdy
hurdygurdy Member Posts: 21
edited 15. Jul 2010, 03:42 in Living with Arthritis archive
Have been on Enbrel for about four years, and at first it was fantastic. But over the last year or so, it's been getting less and less effective. I have the injection on a Thursday morning, and by Sunday night, I'm feeling stiff and in pain.

Anyway, saw the consultant last week and the nurse this week, and they're changing me onto the Rituximab infusion.

I have mixed feelings about this, but ever hopeful of another miracle as with the Enbrel at the outset.

Does anyone have any knowledge of this or tales to tell (good or bad - forewarned is forearmed as the saying goes!)

Comments

  • nickiapp
    nickiapp Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi
    All I can say is good luck. I was on Enbrel for 2 years and had to come off it because it dampened the Immune system too much when I swopped from twice a week to once a week, but it worked and I felt fantastic.
    I then swapped onto Humira for 18 months in the hope it would work, but it didn't and a couple of months ago I had Rituximab infusion it's not worked. I hope you have a shorter withdrawal period than I had, 70 days.Just remember to take a good book or something to do, mp3 player cos its a long day with your new friend the drip, and the first time is longer as they dont give you it as fast as they are always monitoring you for reactions, temp, bp etc. It doesnt start to work until the 2nd infusion and then you should know within 8 weeks if its started to work for you.
    Each time I've hoped the drugs would work. But saw my rheumy today and he's now referring me to Leeds to see if they can help me, and I'm still hopeful even after living with Arthur for 20 years, might even have a 21st party next year for it.

    hurdygurdy wrote:
    Have been on Enbrel for about four years, and at first it was fantastic. But over the last year or so, it's been getting less and less effective. I have the injection on a Thursday morning, and by Sunday night, I'm feeling stiff and in pain.

    Anyway, saw the consultant last week and the nurse this week, and they're changing me onto the Rituximab infusion.

    I have mixed feelings about this, but ever hopeful of another miracle as with the Enbrel at the outset.

    Does anyone have any knowledge of this or tales to tell (good or bad - forewarned is forearmed as the saying goes!)
  • frogmorton
    frogmorton Member Posts: 30,087
    edited 30. Nov -1, 00:00
    Hurdy gurdy

    I have no personal experience but would like to wish you all the best with it.

    Love

    Toni xx
  • hurdygurdy
    hurdygurdy Member Posts: 21
    edited 30. Nov -1, 00:00
    nikkiapp - sorry to hear it didn't work for you and I hope that you find something more effective soon.

    frogmorton - thank you for your kind wishes :)

    delboy - my consultant never even suggested trying one of the other anti-TNFs. Just straight to this infusion. I'm not sure which I'd prefer!



    The rheumy nurse telephoned me today, and said that dose one will be on 19th August, and second is 2nd September. I am both excited and nervous about this. I will see if I can find a good blockbuster, as well as borrowing my friend's portable DVD player to help pass the time.

    Will post and let you all know how I get on, when the time comes.
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Hi Hurdygurdy

    I am in exactly the same position as you, was on enbrel, didn't work so now waiting for my date to start rituximab. I think why they have chosen this is due to the NICE guidelines. I need it to work quickly so that I can go back to work!

    Good luck with your infusion, the 1st day can take all day so I am taking it as an opportunity to chillax if that's possible!!

    Janie

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