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Update on Leflunomide (Arava) for RA

Posted , 5 users are following.

slm222
slm222

Hi All,

So I was very leary about going on this drug for my RA, but I gave in and started taking it. I wanted to update you on how it's going and let you know any side effects since I know there are new users out here every day wanting more information.

I've been taking it for just over 6 weeks now. I have to admit, the aching in my feet has gone down considerably. No more waking up and barely being able to walk! That's a positive for sure. It took longer to start feeling it work on other parts of my body, like my knees, but slowly they are feeling a little better as well.

I have not had any bad side effects. No nausea, no diarrhea (just extremely 'regular' for the first several weeks), no clumps of hair falling out or any of the other major issues that seem to affect some people.

I have definitely lost a few pounds and am able to eat more without gaining weight (which I won't complain about). I think I read that this med can rev up your metabolism, so that might be why. Again, you won't see me complaining about that side effect! smile

That said, I have now had 3 horrible flare ups since taking this medication in my hands and wrists. Three in just 5 weeks time. Normally I'd get a flare up maybe once every 4 months or so. Is it the med? Maybe stress? It's just odd that they started the same time I started the medication. 

I see my Rheumatologist in January for a follow up. I have had 1 blood workup done and everything came back normal.

So for a recap, am I glad I started taking the med? I think so. Not having the awful foot pain is a big plus. But I am definitely wondering about the 3 bad hand/wrist flare ups in just 5 weeks. 

I'll keep taking it and hope that it starts helping the other areas of my body, specifically my hands and wrists.

Take care everyone!

1 like, 7 replies

7 Replies

  • Jan999
    Jan999 slm222

    Posted

    That is really useful information especially for me as I am waiting for an appointment to see a rheumatologist. I can identify with the problems walking first thing on a morning. Despite different anti inflammatories that hasn't improved nor has the other joint pains. I think I will ask about it at my appointment. Thank you suelmc.
    • slm222
      slm222 Jan999

      Posted

      You are very welcome, Matron. I was not looking forward to taking this med and really had to think about it before I started it. I had read about all of the side effects and when I read it was an immune supressant, that also worried me; especially since I was starting a new job at a hospital. 

      The other 2 side effects I forgot to mention are easily bruising and sores that come and go from the inside of my mouth. They don't last long, but they aren't comfortable while there. I get bruised on my body so fast now and it takes forever to go away. I'm assuming this is from the immune supressant in the drug.

      Good luck to you and keep us updated!

  • leslie02225
    leslie02225 slm222

    Posted

    Sue, I have had a similar experience with Methotrexate and the problem with these drugs seem to be the length of time they take to fully take effect. I was diagnosed in June and began taking MTX almost immediately. At first it had little or no affect on the pain and I had to take an NSAID – this was changed to a single steroid injection because my stomach reacted badly to the tablets.

    At the same time, I began to lose weight, dramatically, and between June and the end of September I lost 3 stone (42 lbs about 19.5 kilos). The loss of around 2 lbs or a kilo in weight per week immediately started the hospital thinking that I might have cancer and a seemingly endless series of tests and consultant appointments began. 21 Consultant appointments in all and all of them wanted test doing. I had a Pleural Drain, Endoscopy, Colonoscopy, CT Scans, Ultrasound Scans – the list goes on.

    The end result is that my condition started to stabilise in the beginning of October and the weight loss stopped and the pain etc with it – all that I am left with is a seemingly endless runny nose. They are still not sure about the cancer thing and are still looking just in case but it looks like the RA might have been responsible.

    So, in conclusion, it looks as though for me at least, Methotrexate took from the beginning of June to the end of September to really have any effect.

    As an aside, because I dropped from 13 stone to 10 stone none of my clothes fit me anymore and during the course of our conversation when I saw the Rheumatologist, a couple of days ago, I told him that I was going to get rid of them. His answer was, don’t do that because I will probably put the weight back on again but it will take time as the Methotrexate still has work to do.

    • slm222
      slm222 leslie02225

      Posted

      Wow, leslie02225, that's scary! I have lost weight but not that much. I was already losing weight (I was actually working on it myself) and the med has just helped it along more. I've lost probably 7-10 additional pounds while on this med. Now I'm bummed to hear it will all come back eventually. Well, I'll just have to eat less and workout more. smile

      My doctor told me this med would take a good 3 months to really 'start' taking effect, so I know I still have some time to hopefully help with the hands and wrists. The main issue is that my job has me on a keyboard all day long. So I know that's not helpful. But I have to work so this is what I do.

      I'm so glad to hear that other than a runny nose, you are doing so well with your med. That gives me a lot of hope! Thank you for responding!! Keep me updated on the tests they're giving you on the cancer stuff. I think that's probably due to the fact that the meds are immune supressants which means cancer cells are not being fought off like they normally would.I'm sure your very large amount of weight loss was startling to them. And to you. 

      I'd also love to know if in the next few months things are still stable with you, so please keep in touch!

  • Jan999
    Jan999 slm222

    Posted

    It'll be great to keep in touch. Sharing experiences is really helpful and it's so interesting reading about the pros and cons of these drugs. It's this sort of information doctors don't always have time to discuss with patients. Thank you.
  • danny16391
    danny16391 slm222

    Posted

    make sure they test your liver and kidneys on your bloods.
  • danny16391
    danny16391 slm222

    Posted

    This drug can cause hypertension,and can also damage your kidneys amongst other things.
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