Tocilizumab & Methotrexate : Meds not lasting the month

charleeh
charleeh Member Posts: 173
edited 6. Aug 2013, 16:27 in Living with Arthritis archive
Hi everyone just a quickie to see if anyone else has had this issue and can offer any advice....

I have IV Tocilizumab (TOC) monthly and 5mg Methotrexate (MTX) weekly.

I can only have a half dose of TOC currently as it has hit my white cells bad when I have had a full dose (leading me to have a string of bad infections and still on long term anti biotics), I take the MTX weekly as expected but the meds don't seem to last me the month. The first 2ish weeks I see a remarkable improvement in symptoms but the 3rd week they creep back in and the 4th I am housebound and practically bed ridden again (well bed settee as I can't get upstairs to bed!)

I was wondering if anyone else has ever had this issue with TOC? and if so were they able to have a full dose eventually?... and how did it go?

Thanks everyone.... hope the hot weather did everyone good! :)

Best wishes,
Charleeh

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have the same issue with humira. I inject that fortnightly and for around five days my mobility improves (I'm not aware of it but those around me notice the difference) and then it's back to my bizarre version of normal for the remainder of the fortnight.

    With my experience of three anti TNFs I think it's the nature of these drugs, they give you a boost for a few days and then 'normal' service is resumed. No matter what we take the arthritis is still there ticking over in the background, temporarily subdued, no more than that. Keep up the treatment and enjoy the better days while they still turn up. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I've been thinking about your situation, 5mg of meth isn't that high a dose (mine is 15mg weekly) and maybe the tocilizumab may not be the one for you. Wazz is right, tweaking might need to be done but if your system can't cope with it don't be surprised if you're 'tweaked' on to another med. Good luck with it all and I hope you feel better soon. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi
    Do you think talking to your GP or someone from the hospital or the helpline here might have some help to offer you. It sounds like a hard choice you have to make and I hope you will make use of all the things available to help you learn about your options. But maybe you'v already done that.

    As I don't take this drug, I don't have the experience that you've got, but I hope that you soon get your bloods back to a level that will make it possilbe to go back on your durgs again, if that is the best choice for you.. Good luck, all I can offer is sympathy and send you my very best wishes.
    Love Sue
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
    Hi
    Thanks for the replies!

    I used to be on 25mg MTX tabs weekly but as my immune system took such a bad turn my specialist had to lower my dose. I had a string of infections from a cold, noro virus, tooth abscess and then a bad cellulitis infection which started in one foot and then spread to the other as well. I am still on the long term anti biotics from that last infection now (3 months later).

    I think thats what the doc is trying to do 'tweak' the dose. This is the last resort drug for me at present unfortunately. I have already been on Humira, Infliximab and rituximab, each of which didn't help.

    On the plus side when my immune system has been low my arthritic symptoms have improved dramatically to what they normally are - but I still have to 'limit' what I do as it will cause a flare but the improvement is exceptional. Even my bloods show a dramatic improvement in the inflammatory markers. Its so hard to keep away from 'germy' people LOL!

    I did ask my specialist if I can have treatments 3 weeks apart instead as its not lasting and he said no as TOC isn't licensed to be used that way.

    on a different note......

    A friend of mine put me on to a website which has a theory on it called 'the spoon theory' which I believe sums up arthritis better than anything... even on the best day you can only do so much.

    Thanks again for the replies.
    Charleeh

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