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I've turned down Leflunomide and having a flare

Posted , 8 users are following.

Susanne_M_UK
Susanne_M_UK

When I saw my rheumy a couple of weeks ago, she suggested I give Lefunomide a go (DMARD) because my tapering is slow and I'm struggling to get below 8mg pred. She gave me the leaflet on it and I then had bloods done as well, as I was feeling particularly unwell.

She phoned me with the results and CRP was up at 11 (compared to previous 2). Not too high, but obviously not good either. I was told to increase preds to 8mg (from 7 mg) and have bloodtests monthly at GP surgery.

This was the time I told her I was very unhappy about starting Leflunomide, having read up on them in more detail and not liking the side effects at all. She was ok with that, saying its a balancing act. I've tried methotrexate in the past with awful side effects.

I've just increased pred by another half mg. Having battled so hard to get down to single figures, I'm very, very reluctant to increase further, although the symptoms are still there, although not quite so bad.

I'll ask my GP for another bloodtest before Christmas hopefully.

Background is GCA for 3 years and on very high doses of pred due to flares and chest infections.

So, really what I'm asking is, unless my flare becomes a lot worse, am I ok to wait for bloodtest hopefully in about 2 weeks time and stick at 8.5mg pred?

1 like, 5 replies

5 Replies

  • EileenH
    EileenH Susanne_M_UK

    Posted

    Depends - do your blood tests match your symptoms? But don't reject going back up a bit - not doing so COULD lead to having to go up a lot. Which cancels out the perceived benefit of sticking at your single figure dose. 

    8mg is really pretty low - a physiological dose as they put it in medical speak. And I know experts who feel once you are that low, adding in "steroid sparers" is unlikely to make much difference

     

    And really - 3 years is early days. Five years is a much more likely scenario.

     

    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      Thank you Eileen.

      I would say that, going on my symptoms, the CRP should have been higher. But isn't that hard to estimate considering how long I've been on the pred? Also, I've had flares in the past with nothing much showing in the bloods.

      Of course, my rheumy considers 3 years "a long time", but that's pretty typical!

  • daniel08939
    daniel08939 Susanne_M_UK

    Posted

    I have had PMR on two separate occassions and my blood tests never showed inflammation.
    • Susanne_M_UK
      Susanne_M_UK daniel08939

      Posted

      Daniel, I've had flares in the past too with no raised markers. But I've also had very high markers. It's a puzzle!

  • Michdonn
    Michdonn Susanne_M_UK

    Posted

    Susanne, we all react differently, but I had a flare at 7 mg and did small increase till 20 with no relief, had to jump to 30 mg to get relief. Now if I feel I am getting a flare I jump up my dosage for a few days till I feel stable, then restart my DSNS taper. Always thinking positive with a smile. 🙂

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