Has anyone on an anti-tnf been able to reduce frequency of dose?or if on MTX as well, how much (if so) have you managed to lower your dose?

I'm on enbrel and 15mg methetrexate but now reduced to 7.5 mgs, my Consultant tells me that if that goes well then it would be considered reducing the frequency of enbrel, I'm delighted about this but haven't heard of anyone else having this done.

Thanks :)

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  • Nor have I Williby but then I don't know anyone else who had such a high RF or CRP nor do I know of anyone else who was put straight on a combination of therapies including an anti-tnf? But you will be the pioneering one and our role model - it's got to be better than filling your body with potentially toxic meds unnecessarily hasn't it? And if the RA comes creeping or even roaring back (sooo hope not of course) you do at least know that this mixture works for you and can go back up to the higher dose straight away. Maybe you'll get some replies here from people who have had this experience too but don't worry to much if you don't. TTxx

  • Morning Tilda,

    I thought it was a long shot as I haven't read anyone experience of it on this site; and yes, it does seem I've been treated differently but I put it down to my fantastic Consultant and the fact that that here in Scotland we don't have to apply for funding to access these treatments. It's so unfair......

    Anyway, fingers crossed it'll work although I have been told to stop MTX for at least 3 weeks as wcc is too low, I'm going to crack open a bottle this weekend and make the most of it :) 1 glass of wine is all I can manage these days!

    Hope your still good to, was going to pm you but since this good weather started we've hardly been home but today I have to face a huge sandy pile of washing :(

    xx

  • Still miraculously good re the RA thanks Williby. Bit concerned about soaring BP but hey we can't have it all I guess?

    At least the enforced time off MTX will show whether or not you still need it and maybe when it is reintroduced at a lower dose it will be enough. I haven't been offered anti-tnf and I think it's probably very variable across Scotlabd and you would have qualified by the aggressive nature of your RA and having such a good consultant also made a huge difference. I think with all these things it is a postcode lottery and that applies to where you are in Scotland too.

    Tilda x

  • I have read that it may be possible to reduce the dose of anti-TNF but I have to admit that my anti-TNF is working so well for me I would be very reluctant to reduce the dose. I do believe it is possible though but I think that doctors will have a problem trying to get anyone to do it.

    I have reduced my MTX though since I have been on anti-TNF. I also take leflunomide and my Rheumy has talked about me reducing this but as I have just had 2 major ops this year everything like that is on hold.

    Jo

  • I am on Humira and MTX (and Sulfa). Initially I was on MTX and Sulfa alone, 20 mg MTX per week, 3g Sulfa per day. Then the MTX decided to attack major organs.

    About 9 months ago I was taken off MTX and subsequently qualified for Humira - self-inject every 2 weeks. My MTX has been reintroduced but reduced to 5 mg per week (with the usual Folic Acid a few days later) and Sulfa has remained unchanged.

    Delighted with service I receive from NHS Ayrshire & Arran.

    You say "that here in Scotland we don't have to apply for funding to access these treatments." Funding is always a major issue, hence the strict, multi-visit pain scoring process prior to being qualified as a user. I would hate for anyone not in NHS Scotland to think that we Scots 'Get everything we want for free!'

    Finally, at least one person has said 'I reduced my MTX' - hopefully this reduction was recommended and approved by the Rheumy support team. Sorry if that all sounds pretty pedantic but one never knows who reads this information and what they do with it.

    Hope this helps Wiliby (and others) ;-)

  • Dear Wiliby

    Reducing frequency of dose/reducing dosage of medication certainly does happen, and I am aware of people having their frequency of biologic drug reduced. This will often be when the disease is deemed to be in remission or very well-controlled, so it's a good sign if they are confident that it is okay to try reducing your medication, and hopefully this will be done slowly and with close monitoring.

    A common way to treat RA is sometimes described as a 'step up/step down appraoch'. This generally involves high doses and combinations of medication in initial treatment to hit the disease off, then a gradual reduction as the disease becomes better-controlled.

    There is a paragraph about the possible reduction of medication in well-controlled RA in our article on combination therapy. It is in the section entitled:

    What are the monitoring requirements for newly diagnosed RA patients?

    The article can be read here:

    nras.org.uk/about_rheumatoi...

    Unfortunately I could not find any case studies of individual people that had reduced frequency of biologics, but hopefully this does demonstrate that you are not alone in having this approach suggested to you.

    Kind regards

    Victoria

    (NRAS Helpline)

  • thanks everyone, I'll go onto read that article now Victoria, I have a feeling that maybe I have read that in the past now you mention it... yes, it is going to be done slowly, the Consultant told me that he wouldn't consider the reduction in anti-tnf until 1 year of RA being under control.

    many thanks!

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