Been taking Leflunomide now for 2 months

Posted , 10 users are following.

Hello to the world been taking Leflunomide now for 2 months after being on different other one before which give me lung infections twice could anybody out there tell me if they had problems like being sick feeling bad all the time etc due to taking tablets like methotrexate sulfasalazine are anything else  . The Leflunomide have side effects with me but i am not sick but on a all time low is there anything better out there for me all new to this type of tablet my best wishes go out to everybody its good to talk . From a  Rheumatoid Arthritis suffer . 

 

1 like, 10 replies

10 Replies

  • Posted

    Everyone complains that methotrexate makes them feel sick.

    The four main drugs for RA are Methotrexate, Leflunomide, Sulfasalazine and Hydrxychloroquine

    Methotrexate is the best, but side effects can be nasty. After that its Leflunomide.

    When taking methotrexate were you taking folic acid as well?

  • Posted

    Have you had your blood pressure checked since you started on the leflunomide, a rare complication of taking Leflunomide, that I had, you feel terrible if your blood pressure is too high, let alone being dangerous.

    I can manage 10mg of leflunomide, with very little side effects, and no blood pressure issues, Dr suggested I take in the morning, but cannot tolerate the diahorea if I take in the morning, so I take at night, and then in the morning when I get up wooosh, and i'm in the clear for the rest of the day, family know to keep that toilet clear because there is no waiting when you need to go you need to go.

    MTX, you can take as an injection, I do, and I was a little needle phobic, still am, but local GP helped me through the first few times I had to inject, a nurse could do the same, seems I also have the issue of not taking up MTX through my stomach, so getting very little value for swallowing them.

    Salfasalzine and I do not agree with each other at all, itch like mad thing, it seems I have a sulfur allergy, and even though Leflunomide are sulfur based, maybe thats why I have high blood pressure with them, I can tolerate the lessor dose just.

    Dr recently put me on Palquenel, sorry spelling, it seems to have settled down my arthritis, but at the same time I have cut out ALL MY WHEAT, NONE, NADA, within about 6 hours I could feel the difference, something happened, but the swelling in my joints that was really getting bad seems to have settled, fingers crossed that it stays that way, and I will keep away from wheat for while longer, due another blood test soon to see what my ESR AND CRP or are how high, I just know that it will be less than usual I hope.

     

  • Posted

    I’m taking leflounomide and methotrexate. Been on both about a year. Tried enbrel methotrexate together. Got no results from enbrel.  You’re right the leflounomide makes me feel bad most of the day. Along w methotrexate it’s a bear.  Been approved for humira but haven’t started. The feeling bad doesn’t go away. Such are the problems with these types of medicine. 
  • Posted

    Hi I've never had a problem with Sulfasalazine, methotrexate I ended up in A and E after one week of taking, I am now on Benepali, absolutely no side effects after 5 months and working brilliant and inflammation right down, have you been on biologicals?, Benepali is a biological drug.

  • Posted

    Hi I've never had a problem with Sulfasalazine, methotrexate I ended up in A and E after one week of taking, I am now on Benepali, absolutely no side effects after 5 months and working brilliant and inflammation right down, have you been on biologicals?, Benepali is a biological drug.

  • Posted

    Hi Maxwell 747.

    I tried all of these. Felt worse from methotrexate. My liver function suffered and the down/sickness came from tablets in general. Ask to try Etanercept injection. I take this once weekly, and have had 8 years of remission. I hope you feel better soon. ☺

    • Posted

      Thanks for your advice i will take it on board not seeing consultant until January had to go and have my blood taken again twice in one week as my immune system is not right at all tell you the truth my sleeping pattern is all over the place and i'm not feeling well at all you can tell theirs something wrong going on within your body and its not a nice feeling at all thanks for leaving message best wishes Maxwell .   

  • Posted

    I am so sorry, Maxwell 747, I understand - the last 7 months of my life have been a nightmare between the methotrexate and then following that Arava and the endless stream of dehabilitating side effectsside effects.  My rheumy has stopped them both and now am only doing Humira - and hoping it does the trick.  Now I am just waiting for the crap to clear from my system.  I would talk to you rheumatologist about other options, now, as opposed to later - because if you are like me, it won't get better - only worse.

  • Posted

    Hi Maxwell sorry to hear about your struggles. It seems from my experience and that of others that it takes to work out which drugs and combinations work best.

    I don't know much about the biologics- what are they and when are they prescribed? I have been told that they are more expensive?

    It would also be useful to know more about what natural remedies have helped others.

  • Posted

    Been taking Leflunomide now almost a year i did have a few breaks from it because of my colon but it was sorted out quickly i'm still have side affects which is my mood is low i feel like life not worth living sometimes sick as well i have never had high blood presser but do now normal me is 128 to 131 now its between 148 and 176 worry a bit i have flair ups really bad still hands feet and for some reason my face around the forehead and nose and cheeks i said to the consultant that its doing me know good he just said give him  a steroid injection that should last about 2 3 weeks i have them from my doctor as well in the shoulder it as seemed that the RA as taken over most joints in my body its not working for me , at the moment i have got a bad cold now again i don't suffer from colds i can count the colds in all my life on the one hand i know that the tablets we bring the immune system down and then starts it back up what happens to you if you do get a bad cold like mine some advice would be good as the RA nurse said keep talking them somethings telling me that is the wrong advice my best wishes go out to you all Max well .

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