Anyone taken Leflunomide?

dibdab
dibdab Member Posts: 1,498
edited 19. Jan 2017, 18:08 in Living with Arthritis archive
Hello all,

I had a rheumy appointment on Monday to follow up on problems with my meds....methotrexate makes me feel really unwell for a full day every week, and sulphasalazine is giving me a sore mouth...oh deep joy! It has now been suggested I abandon the meth, persevere with sulph and add in Leflunomide!

So I collected the prescription then read the warnings leaflet....oh my goodness :oops: ......it states that they shouldn't be taken with hydroxychloroquine, which is part of my drugs cocktail from the rheumy. I've rung the helpline but still await a reply, so I was wondering if others had used the 2 together and how they got on with Leflunomide.

Also, if I'm no longer on meth will the folic acid no longer be needed.

Sadly the lung problems I have mean I can't try the more effective drugs, so for now it's another steroid injection to damp things down and see if the Lef works and if I tolerate it any better....deep joy!

Any insights much appreciated.

Deb x

Comments

  • stickywicket
    stickywicket Member Posts: 27,708
    edited 30. Nov -1, 00:00
    I took lef briefly. My first instinct was to say I took hydroxy with it but, on reflection, I think that was my little non-hydroxy phase. I had no problems with the lef until I got a nasty cold that interfered with my breathing to the point where they threatened me with hospital. My GP whipped me off it and that was the end of that. In lef's defence, though, I think it was just a bad combination of things (flu jab while unaware I was harbouring a cold, mainly) and the same would have happened whichever DMARD I was on. A friend has been on lef for years with no problems.

    If lef and meth shouldn't be combined you are absolutely right to check it out. My guess is that it'll be a bit like meth and NSAIDS ie ideally not to be combined but sometimes, for some people, in case of necessity......

    I don't know if you can drop the F.A. but a good question.

    I hope it all works out well for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I took lef for a while but it didn't suit: I've never taken hydroxy, so cannot help on that front, but I have taken contra-indicated meds with no problems. We do negotiate narrow and slippery paths every now and again, don't we? You are quite right to query the combination and I hope you get an answer sooner rather than later.

    How's the pesky collar bone doing? Or, more to the point, how are you doing with it? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hi Deb

    All these medications say you shouldn't take them in combination but I've found that if the specialists prescribe, it is ok. I know that MTX and lef are similar because they are both metabolised in the liver and therefore, it increases the possibility of side effects and abnormal liver results. That said, if you've tolerate MTX well, you may be ok.

    To be honest, I'd usually say speak to your pharmacist but I don't think these meds are commonly prescribed enough and I've found that they defer to rheumatologists, so do give rheum nurses a quick buzz.

    I had a good response to lef. It eventually stopped working but when it did, it was great and I had no complaints.

    Best of luck! xx
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thanks for all the responses. I've started the lef and so far so good....no nausea or fatigue which is my big problem with meth. Finally managed to get a response from the rheumy help line who tell me to abandon the folic acid and take the hydroxyl chloroquine. I'v got fortnightly bloods for the next 8 weeks, and have to take my blood pressure at home daily as lef can cause issues with that. So onwards and hopefully upwards!!!! In the meantime the steroid injection is starting to calm down my sore hands and knees which is a relief.


    Deb x
  • stickywicket
    stickywicket Member Posts: 27,708
    edited 30. Nov -1, 00:00
    An excellent start, Deb. Let's have more of the same :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • ELAINE55555
    ELAINE55555 Member Posts: 123
    edited 30. Nov -1, 00:00
    Hi Dibdab
    I was taking Mtx injection and hydroxy about 4 years ago, but unfortunately they were not quite doing their job. I then had leflunomide added to the mix (triple therapy), and since then I feel most days that I don't have RA anymore! I also take folic 6 days a week. I do go to have blood checked every 3/4 month, and never have a problem. That said, my RA came on virtually overnight, I was diagnosed within a few days and started on the meds a few days later. I think this is one reason that I have had such a good outcome,
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