Leflunomide anyone?

Hi,not sure if I ever properly introduced myself,I started with psoriatic arthritis in December 2018,saw GP onward referral to Rheumatology in April 2019,at first seronegative rheumatoid arthritis was suspected,I was put on methotrexate with prednisolone as a bridge,had to come off MTX when I developed cough and breathlessness. Then I was put on sulfasalazine,that put me in hospital and poorly for a while after. After taking large doses of steroids to calm the allergy to sulfa down,red patches appeared on my legs,this in addition to what i'd always thought was excema in and around my ears (turns out it's psoriasis) I was diagnosed with psoriatic arthritis in March this year.

I was asked to try mtx again,but at a lower dose with low dose pred,I stuck with it for 8 weeks then had to admit defeat.

I had a telephone consultation yesterday and the next exciting (??) drug they want me to try is leflunomide.

I know it might affect different people differently but I wondered what anyone else has thought of this drug?

Thank you!

Comments

  • stickywicket
    stickywicket Member Posts: 27,088

    Full marks for trying and persevering!

    I was briefly on lef and it worked well for me. Taken off it by – I think – an over-zealous GP when I just escaped hospitalisation due to severe asthma. I blame myself. I'd just had my annual flu jab precisely as I was starting a cold. I now check when the jab will be available and get it immediately before the cold season starts.

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 25. Jun 2020, 17:29

    I took it years ago but the arthritis didn't notice. I have a friend who is doing OK on it to the point she doesn't need a forum. DD

  • KazandNoo
    KazandNoo Member Posts: 126

    Thank you both for your replies,much appreciated ☺️

  • KazandNoo
    KazandNoo Member Posts: 126

    Hope it will work,my dactylitis is going nuts today,maybe the weather? Thundery,humid and odd bursts of rain here. (Cumbria) 😻

    Take care everyone.

  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    My OA is having a field day thanks to barometric pressure. The human body is a weird and wonderful thing: often weird, rarely wonderful. DD

  • KazandNoo
    KazandNoo Member Posts: 126
    Just an update. So I went to the hospital today for an appointment with the rheumatologist nurse specialist as they wanted me to go in to go through the details of going on leflunomide, take my BP and bloods and check my joints (3 of which playing up at the moment,(psoriasis also making a comeback,yay) apparently if this doesn't work or doesn't agree with me it's biologics next. Are these better?Thanks for listening! 👍
  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    Biologics have not done for me what they have done for others but that's nothing new. As I see it there are three 'levels' of drugs for disease control namely NSAIDs, DMARDs and biologics. I had to fail on at least three DMARDs before applying for biologics which wasted around six years years thus allowing stuff to get worse. Now people are moved onto these meds more quickly and the outcomes in terms of mobility and lack of visible joint damage seem to be better.

    Lef was my second DMARD and I struggled with severe headaches for several months in the hope they would subside and my bloods improve but neither happened. For others it's a very effective treatment and I hope it will be so for you. DD

  • KazandNoo
    KazandNoo Member Posts: 126
    Thank you DD,this will be my 3rd Dmard but I'm only 18 months into this journey so hopefully as you say,the sooner I can get something which works/ I can tolerate the better. I see you have had a long battle but are still battling, good on you! 👍
  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    I don't see it as a battle, it's just normal life. I was born with eczema years before steroid creams were invented, my classmates loved it when we did things such as leprosy and Ancient Egypt in history lessons as I was sitting there swathed in crepe bandges or my rashy, cracked skin softly bleeding. I can still hear the cries of 'Unclean! Unclean!' ringing out as the kids swung imaginary bells and naturally they refused to touch me. In their defence they were only seven or eight so of course picked on anyone different. Then the ashma started when I was seven, five years before the first inhalers. That added to their entertainment as the rashy bleeding lump now couldn't breathe. 😂

    Life now is a comparative doddle albeit a painful one. DD

  • KazandNoo
    KazandNoo Member Posts: 126

    Sorry,it's maybe because I see it as a battle at the moment,to get up for work when joints are screaming,when I get there all but a minority social distance and have to be reminded,and hoping the next drug on the list will work. You are right though,it's starting to become normal life whether I like it or not. 😀

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