leflunomide-feel awful!

sirdannytee
sirdannytee Member Posts: 6
edited 13. Sep 2010, 08:43 in Living with Arthritis archive
hey,
been on leflunomide for about a month. since starting it parts of my body have starting hurting. parts of my body that were fine before starting it. my back and my shoulder being the main culprits. the pain is awful. its keeping me awake at night and generally making me miserable. i've also getting alot of headaches. should i try something else? anyone else had similar problems?

cheers!

dan

Comments

  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Hi Dan

    Sorry, I can't help (I am on methotrexate), but I'm sure there are people on the forum who will be able to advise you. It's a bit quiet today, but hopefully you will get some responses tomorow.

    Marion
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I had hellish headaches on it, to the point of spending an entire Easter break in a room with blackout blinds drawn. Ghastly drug, well for me anyway. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    HI Dan

    sorry you are feeling so rough at the moment.

    I take Leflunomide and did have some stomach problems early on but they settled very quickly. My only other problem was when my Methotrexate and Leflunomide were both raised, and I had a lot of infections. Since then I have been on lower doses and have been mostly ok.

    I just wondered what dose Leflunomide you started on? I presume 10mg, which I currently take.

    Are you taking anything else apart from the Leflunomide? It isnt' a pain-killer itself, rather it is a disease modifying drug (DMARD) so some of us take another DMARD as well as some form of pain relief such as NSAIDs (like Ibuprofen or naproxen) and/or paracetamol, co-codamol etc.

    If you are not taking anything else it might be worth discussing your symptoms with your GP, as it sounds like the Leflunomide alone isn't going to be enough for you.

    hope that helps a bit.

    WOnky
  • frogmorton
    frogmorton Member Posts: 29,773
    edited 30. Nov -1, 00:00
    If I were you...

    I would do just what Wonky says and go back to your GP to have a discussion about it all.

    Might genuinely be a fklare anyway, but the headaches do sound pretty miserable.

    Hope you get some answers

    Love

    Toni x
  • englishrose
    englishrose Member Posts: 99
    edited 30. Nov -1, 00:00
    Sorry to hear that you are having problems with this drug. I have been on it since April and fell greatly improved. I did have trouble with my tummy and high BP. BP meds sorted that out and the runs have improved but not completly. I will put up with this to stay on Leflunomide. Itas good advice to discuss with GP or Rheumy nurse. I hope you can stick with it and find real benefit. Keep us posted.
  • dippydoodah
    dippydoodah Member Posts: 350
    edited 30. Nov -1, 00:00
    Sorry to hear you're feeling so unwell at the moment. I cannot help unfortunately as I have OA and don't know about all these meds but I hope you start to feel a little better soon x
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Dan and welcome,

    sorry you are having problems with your new med. Have you reported your problems to the doc/rheumy? What did they say? Finding the right meds combination is a matter of trial and error and what works for one person doesn't necessarily work for another.

    Hope you start to improve soon.

    No personal experience of this med as I have OA which they treat with different meds and generally tools (saws/drills and bits of metal etc*)

    Speedy

    PS just incase I alarmed any newcomers with OA - * is referring to surgery!! Which when you are desperate enough - really helps.
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • polly24
    polly24 Member Posts: 34
    edited 30. Nov -1, 00:00
    sirdannytee wrote:
    hey,
    been on leflunomide for about a month. since starting it parts of my body have starting hurting. parts of my body that were fine before starting it. my back and my shoulder being the main culprits. the pain is awful. its keeping me awake at night and generally making me miserable. i've also getting alot of headaches. should i try something else? anyone else had similar problems?

    cheers!

    dan
    hi go back to ur doc i had same problem with headaches and ending up with a small stroke am very lucky came out of it ok :cry::cry:
  • maggiemoo
    maggiemoo Member Posts: 16
    edited 30. Nov -1, 00:00
    sirdannytee wrote:
    hey,
    been on leflunomide for about a month. since starting it parts of my body have starting hurting. parts of my body that were fine before starting it. my back and my shoulder being the main culprits. the pain is awful. its keeping me awake at night and generally making me miserable. i've also getting alot of headaches. should i try something else? anyone else had similar problems?

    cheers!

    dan
    Hi Dan,Iwas on leflunomide for about 6 months, but got a really sore mouth and developed blisters on my lipso had to come off it, still on sulfa and methx.
    Hope you feela bit better
    Maggie
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