Leflunomide - anyone taken?

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Hi all. Had to go off methotrexate a week and half ago due to side affects. The nausea was getting better but the third day I was dizzy, achy, and light headed. 

Last night ankles and wrists started hurting, and got up this morning with the only joints not hurting are my elbows and shoulders. Luckily got into the rheum you today and we are trying leflunomide. 

Has anyone had luck with it?  Right now I just want to hurt at a level where I can function. 

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7 Replies

  • Posted

    I take leflunomide if it works wonderful stuff, 20ml tablets completely knocked down my arthiritis, but I have a rare reaction to the 20ml, my blood pressure was off the scale high, dangerously high, so this is a side effect you need to monitor, hope you don't have that reaction.

    I now take 10ml of leflunomide with no side effect, or almost none, I have very loose bowels in the morning, seems to be one of known side effects, but once you have been first thing in the morning you are fine for the rest of the day, takes me about 10 mins after I get vertical, and then i have to run, family now know not to be using the loo in that half hour range after I surface.

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  • Posted

    Have never taken...but if the mtx was helping did you consider the injections?  I have had no side effects from them...but god luck with the new med!
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  • Posted

    Thanks lyn1951 and jayne7831 for the response. 

    Good to know about the blood pressure. I'm normally low at 90/70 so hopefully I will bo good. How long before you saw relief?  I'm worse today than yesterday!  Took my first dose yesterday afternoon. 

    The metho injections weren't an option due to the dizziness. Dr didn't think they would make a difference with those symptoms. 

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    • Posted

      About 10 days before I got real relief from the arthiritis, but again I had terrible headaches and generally felt unwell, but not from the arthirtis, it turned out to be high blood pressure, and the only new thing that had been added to the mix in the previous ten days was the leflunomide at 20ml dose, as I had achieved some relief at 10ml the rheumo thought the higher dosage might help. Rare i beieve only about 2% of the population are affected with high blood pressure from this tablet. So best wishes from this end, hope it helps.
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  • Posted

    I have been on Lefunomide for about 3 months and have not had any adverse side effects but also not much luck with it helping my pain either. I am now on Humira, Sulfasalazine and Leflunomide. I hope it works for you!
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  • Posted

    I switched to leflunamide after trying both mtx injections then tablets. The side effects to the mtx was horrible nearly all my hair had fallen out and I was so sick I couldn't even get out of bed most days. Leflunamide is a ray of sunshine compared to mtx. I've never had any of the side effects and I take 20ml a day.

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  • Posted

    Hi All - question.  How long until you saw a benefit from taking leflumonide?  I had a bad flare three days ago.  My hands were the worst, just had to sit with them still.  Haven't had my hands be bad like that before.  Called the dr office to see if there is anything I could do.  They said the leflumonide could take up to 3 months to work (yikes!).  They suggested Capsaicin cream - which does help.  They also did a prednisone pack.  I was already on 5 mg a day, so an increase for a week.

    Hoping these flares lessen as I've been missing a lot of work.

    Wanted to see what others had experienced.  Thanks!

    Feeling better now.

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