Tocilizumab

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Shantelx
Shantelx Member Posts: 22
edited 25. Apr 2014, 12:14 in Living with Arthritis archive
Can anyone give me some more information about this drug as I'm on the waiting list for it I have had a leaflet off my doctor however it's not got a lot about the drug I've googled it but seem to be finding more negative than good points about it!!

Thanks

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  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
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    Hi again shantel,

    I know I said I couldn't give you any info re this drug, from a personal view I can't but what I do know is its just another type of'biologic' like the anti TNFs you've had. It works on a different type of inflammatory chemical called interleukin rather than TNF. If you don't get enough relief of one biological they will try different ones. Tocilizumab is newer than some of the others like infliximab, humira, enbrel etc. have you seen the arthritis research uk info on it? Just look in their website, they generally give a good concise summary of the drugs.

    As always with the Internet, you will find some scary things and whilst its important to know what side effects might happen, people whove had bad experiences are much more likely to write about it on the Internet than people who haven't had side effects so it can give you a skewed view! (That said, I'm the worst for looking into side effects as detailed as looking at the clinical trials outcomes for the drugs! :roll: )

    Good luck anyway x
  • Shantelx
    Shantelx Member Posts: 22
    edited 30. Nov -1, 00:00
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    Thank you lovely yeah I've read up on that site just looking to see if anyone's been on it and it's been a success thanks for the info though :) I'm the same look into stuff way more than I should haha

    Xx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi Shantel..glad you have started this thread and I hope that someone comes up with some advice..good luck..
    Love
    Barbara
  • Shantelx
    Shantelx Member Posts: 22
    edited 30. Nov -1, 00:00
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    Thank you me too :)

    Xx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    just bumping this up for you..it was very quiet yesterday..
    Love
    Barbara
  • sand1968
    sand1968 Member Posts: 3
    edited 30. Nov -1, 00:00
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    Hi - I've been on Tocilizumab since August 2013 and I have to say it has been great! I have no problems with the infusion itself, no pain at all now and no side effects apart from my WBC is low. I've had to delay the last infusion while we wait for the white cell count to increase, but it hasn't been a problem. Maybe I will only have the infusion once every 6 weeks rather than the usual 4 weeks. I can't find many people on it wither but guess it's true - you only generally hear from those who have had trouble. I'd recommend it and nowadays you wouldn't even know I had RA!!!
  • Shantelx
    Shantelx Member Posts: 22
    edited 30. Nov -1, 00:00
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    That's great to know I've had my first infusion due for my second soon no effect yet but hopefully see some change in the next few weeks thanks for commenting :)
  • premierscfc04
    premierscfc04 Member Posts: 57
    edited 30. Nov -1, 00:00
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    I too have been on Tocilizumab since Feb last year, I've also had problems with my WBC, which requires repeat blood tests one of which is tomorrow. Hopefully the BT will come back ok this time so I can have the next planned infusion on Monday.

    Since being on it my RA has been under control, but I've had a number of infections (abscess, pouk & shingles) but these may be just a coincidence.

    I hope it works as well for you as it does for me!
  • sand1968
    sand1968 Member Posts: 3
    edited 30. Nov -1, 00:00
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    Interesting to hear that someone else has had problems with the low WBC. My specialist has decided I should just have the blood test and infusion every 6 weeks from now on rather than the usual four weeks. Fingers crossed it keeps working as well as it has done....
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    having first infusion myself on friday , can you drive afterwards & how long does it take , realy hope this drug works well as not got on well with the two anti-tnf drugs I been on
  • grannymart
    grannymart Member Posts: 1
    edited 30. Nov -1, 00:00
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    I' had my 13th infusion of Toc today. I'm currently on a trial where I may, or may not, also be on methotrexate (10 mg) but I haven't had a single adverse side effect. In fact, the dreadful pain I was in before has subsided remarkably. My DAS score is much lower too. I'm still very stiff but I feel so much better. I had to give up my teaching job a few years ago due to RA but, since being on Toc, I have been able to take up some voluntary work and I get out and about much more. My advice would be give it a try!☺
  • sand1968
    sand1968 Member Posts: 3
    edited 30. Nov -1, 00:00
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    The actual infusion takes an hour and then you must wait another hour for observation. However the thing that always takes up the most time for me is waiting for the doctor to come round at the start to do his/her observations. So I arraive about 8.45 in the morning and usually get out just after 12. For me driving hasn't been a problem and afterwards I always drive straight on to work. You might be different so do check you're definately ok before driving.
  • premierscfc04
    premierscfc04 Member Posts: 57
    edited 30. Nov -1, 00:00
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    trepolpen wrote:
    having first infusion myself on friday , can you drive afterwards & how long does it take , realy hope this drug works well as not got on well with the two anti-tnf drugs I been on

    I've always got a Taxi as the Toci has always made me a little woozy (during the infusion & a couple of hrs afterwards too.)

    I hope the infusion was successful!
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    premierscfc04 wrote:
    trepolpen wrote:
    having first infusion myself on friday , can you drive afterwards & how long does it take , realy hope this drug works well as not got on well with the two anti-tnf drugs I been on

    I've always got a Taxi as the Toci has always made me a little woozy (during the infusion & a couple of hrs afterwards too.)

    I hope the infusion was successful!

    know what you mean about a bit woozy , first one went well & think the drug is starting to work a bit so very hopeful & no side effects so far
  • premierscfc04
    premierscfc04 Member Posts: 57
    edited 30. Nov -1, 00:00
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    Has anyone else had mouth ulcers while on Tocilizumab, they always appear or flare after the infusion. Does anyone know what to recommend to treat them?
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