Lefluonmide not working

Hello lovely people

I have just had another nasty fall and got severe bruising on my left leg...this is the second A+E trip due to a fall since I started Lefluonmide. Thankfully no broken bones - doctor said 'made from girders' so that is good news. So got 10 days resting with crutches :/

On Lefluonmide I have had more flares, felt slow and in pain on the 20 mg a day than I did no MTX and Hydroxy which didn't work either. Trips to GP twice in two months with chest pains and breathlessness but GP blamed viruses and my tablets..:/

Been on Lefluonmide since August last year and don't feel any better..I have my consultant review tomorrow...7lbs heavier and mood worse.

Sorry for the moan but where do I go from the DMARD's :/

Gentle hugs

Fiona x

4 Replies

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  • Hi Fiona, sorry to hear that things are not going well, I know how dispiriting that can be. It might be a good idea to take someone with you to see your consultant if possible, perhaps they could take a few notes. I think you have to lay it on the line tell him/her exactly how you're feeling, and how it's affecting your everyday life, your mobility, including your falls, and your mood. Again, it's easier if you have written down what you need to say, so that you don't forget something important. I always find it helps.

    If you have failed on 3 DMARDS, and your DAS score is high, you should be eligible for biologics, so be prepared to discuss this possibility. It does sound as if you've given leflunomide plenty of time, so it's not unreasonable to expect a change.

    Good luck with your appointment, keep us posted! Mavis x

  • Hi Rockpool60,

    as hatshepsut mentions, if you do not respond well on the standard DMARDs then there are a group of DMARDs called biologics that can be looked at. There are strict guidelines to be observed before these can be prescribed. I have put a link to out information on the anti-TNFs for you which are generally the first biologics to be suggested (not always):

    nras.org.uk/anti-tnfa-treat...

    Don't know how the review with your consultant went but if you do need more information on biologics or any of the standard DMARDs, please feel free to call the helpline on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Beverley (NRAS Helpline)

  • Hello to you both for replying :D

    Thank you for advice. I sadly didn't get to see my own Rheumatologist but a locum as she is off sick. He didn't think there was a problem with the Lefluonmide and wants me to continue at 20mg a day. I was given a steroid jab and Naproxen for two weeks and sent for a chest xray as I had complained of breathlessness on two occasions. Review in a year unless I have concerns.

    Oh well :/

  • Hi Rockpool60,

    Hope the x-rays prove to be helpful one way or another. But certainly, as has been suggested, if you still have concerns then get in touch with your rheumatology team again. best wishes and hope you feel better soon,

    Beverley

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