Is there anybody taking Leflunomide

Been to Poole rhumy this week ref my RA,, I had no joy at Dorchester with the rhumy doctor there, so transfered to Poole, Dr Richards has been wonderful, my last three trials of tablets was a disaster, reacted to them quite badly, so he has prescribed Leflunomide, on day 3 at the moment, and so far no problems,,does anybody else take them with no problems

14 Replies

  • Hi Chrissie,

    I was prescribed leflunomide last October after unsuccessful attempts with other Dmards. After 10 days on it I started having severe breathing problems which lasted for 5 months and I couldn't walk to the bathroom without stopping a few times. It was horrendous. My Rheumy stopped the leflunomide straight away but said it wouldn't be the cause anyway. I was told it was asthma, infections, pneumonia etc etc only after being hospitalised 5 times and me insisting to see a lung specialist did I find out the leflunomide caused a severe reaction in my lungs and has left me with lungs that function 40% less than the average person. Although I was only on the drug a short time the reaction lasted all that time and that was confirmed by the lung specialist.

    Iam told this reaction does happen but is quite rare.

    I wish you luck with it the chances are you will be ok but don't take any chest/breathing problems lightly, phone your rheumy immediately if you experience anything like that just to be on the safe side.


  • I am and no side effects whatsoever . Really helps my swelling x

  • I have been prescribed leflunomide and been on them for about a year now I take 10mg a day combined with 25mg Methotrexate a week. I did feel very nauseous initially but that has now gone. I really hope that these work for you this time.


  • Hi Chrissie,

    I used leflunomide for about 11 years with great succes. No side effects till it didn't work Now I am on a biological, Tocilizumab.

    I wish you all the best, and I keep my fingers crossed that it will help for you,

    Greetings from The Netherlands


  • I to have just started on that, how are you finding it. I was on retuximab but they had to take me off it because I've now got giant cell arteriosclerosis and vasculitis. Don't think many people are on this drug. I've not had any side effects so far only off the steroids. Stay well Jeannette x

  • Hi Jeanette,

    I have had 2 infusions so far, every 4 weeks. No side effects sofar. A little bit more tired the first few days. After the second infusion it look likes the pain and stiffness in the morning are less than before. So I keep my fingers crossed.

    Wish that it will be succesfull for the both of us!

    Xx Bas

  • Hi Jeanette ,

    No I don't think too there are many people on this drug. That were severe Side effects you had of Retuximab.

    I really hope it will work for the both of us.


  • I've been on leflunomide for nearly 3 years, alongside MTX and humira. I had no side effects. I did notice that I started to pick up more viral and bacterial infections on the combination but it wasn't that bad.

    Best of luck.

  • Hello Chrissie :) I've been taking Leflunomide alongside Simponi since early 2012 and have had no serious side effects. It works well because I once had to stop it for a few months and some of the joint pain came back. I'm on a fairly low dose (10mg daily) so if you do experience side effects, you can always ask your rheumy to reduce the dose! Are you on any other meds alongside it? I've never taken it on its own so can only comment with regards to combination therapy!! best, Christine xx

  • Hi Chrissie, I have been on Leflunomide for 6 months now and apart from a problem with loose bowels at the beginning which have now settled down I have had no problems with it. I have a long standing lung condition too but it doesn't seem to have been affected by the drug. I take 10mgs daily and I can honestly say it is the easiest med to take. I was on MTX before and always had to gear myself up to take it as I knew it would be followed by 3 days of nausea so it's great to be able to take an RA drug without suffering any side effects.


  • I take it and have no side affects

  • sorry to have taken so long in thanking everyone for there replies,, so far so good, no reaction,, have blood tests this week to make sure all is well,,,,then back to Poole to see the rhumy,,,1st time i have been pain free for ages,, but then he did give me a injection in the proverbial before i left, which helped a great deal

  • I was one of the first patients to take this drug. It's my understanding it came out in about 2000 and I have been taking it ever since. My memory doesn't serve me that well but I think it started working after about 2 to 3 months and for the first 7/8 years I have never felt so well on anything before or since. I still take it, but at a lower dose as I am also on biologics now. The only side effect I notice is that my stools tend to be loose - but have had no other problems. Hope this helps. Best wishes Pat

  • Thanks for that lilian ..its good to read something positive about a drug I have just started myself.

You may also like...