tofacitinib (Xeljanz) anyone on this biologic

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trepolpen
trepolpen Member Posts: 504
edited 5. Oct 2017, 07:05 in Living with Arthritis archive
Hi , my Rheumatology Consultant is thinking of putting me on this drug , its a biologic but taken in tablet form , was on rituximab but need two new knees & my left hip replaced but have got other health issues so they stopped it along with methotrexate

only problem is I need high dose steriods with my CRP can be over 100 they want to try to reduce my steriod with putting me on Tofactnib but not sure if it would be a trail or if it is approved by NICE

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  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    It looks to be 'work in progress' as far as NICE is concerned, with an expected publication date of December 2017. It seems to have been first referred to them 2011/12 by the Department of Health, for appraisal. So you would need to put your question about whether you would in effect be part of a trial to the doctors, although one would have expected and hoped that if this is the case you would have been given that information already.
  • stickywicket
    stickywicket Member Posts: 27,732
    edited 30. Nov -1, 00:00
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    I agree. If it's a trial you should have been told.

    I do think it's pretty near mainstream, though. This is the Mims (GP's bible) webpage for it http://tinyurl.com/yayk9kgj

    I guess it's your decision, trepolpen but, if you're going to need surgery, it might be a better option than steroids.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    thanks for the replys , think my Consultant thought it would be only few weeks for NICE approval , the problem with rituximab is the time it stays in you system having infusion every 6 months & the surgeon wanted it stopped because risk of infection + they stopped Methotrexate after 18 years because of liver damage , also have problems with leg ulcers & they have to clear up before any joint replacement can be done

    got avascular necrosis in my hip from a infection three years ago , & need TKR on both knees , also spent 5 days in critical care earlier this year with sepsis & Kidney failer but that is all cleared now

    I agree about trailing Tofacitnib would be better than high dose steriods & think the surgeon may use that as a reason for not doing the joints
  • stickywicket
    stickywicket Member Posts: 27,732
    edited 30. Nov -1, 00:00
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    On the contrary, trepolpen, it might be that getting you off steroids would make the operations possible. Steroids can actually be the cause of all the problems you've just listed. Perhaps this new biologic could make many good things possible.

    I suggest you talk things over with your consultant and I do wish you well if you embark on them. (And, of course, if you don't.) Please keep us updated.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    Just started Tofacitinib this week , got my delivery from Health Care At Home & they sent two months of tablets at a time

    it says New Medicines
    Xeljanz ( Tofacitinib) · Rheumatoid arthritis (RA), moderate-to-severe in patients unresponsive to DMARDs or MTX

    they took me off MTX after 18 years because long term it can do damage to liver but they are doing scan to check , I am hoping I can get my steriod use down & maybe early next year think about getting my joints fixed

    interested if anyone else is trying this drug
  • stickywicket
    stickywicket Member Posts: 27,732
    edited 30. Nov -1, 00:00
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    Have you not had regular blood tests to check (among other things) your liver while on methotrexate, trepolpen? I've been on meth for 17 years and my liver function tests are all very good.

    I do hope the new med will help you to get off the steroids.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    the surgerys here merged into one large surgery & its not easy to arrange now , had two in august when starting the drug at the hospital but now need to chase the surgery up , they been sent when to do it but its the receptionist that is the problem

    but will chase them to sort it