I have PsRA andI j have been on MTX for a good few years and tolerated it reasonably well,first tablets now injections, but for about the last year I have been really rough on it, feeling nausea about 4out of seven days ,being sick occasionally,hot flushes every day , sometimes 4 or so every hour,and fatigue about 4days from seven. My question is does Leflunomide have the same side effects is it worth changing to it ,has anyone had experience of this drug and did it help. To be honest the PsRA is very good at the moment and I am beginning to question if I still need to be taking anything,but I know that I would risk a flare and maybe damage done . My quality of life is very poor as I’m always too tired or feeling sick to do anything much. Any wise words my friends?
Is it time to change MTX: I have PsRA andI j have been... - NRAS
Is it time to change MTX
With the caveat that I’m not medically qualified. I have PsA, and was initially fine side effects wise on mtx, but found no benefit at all otherwise. Added in leflunomide, which was when I started to see some progress, but was kept on the mtx: after a few months taking subcut mtx at 25mg, I found I was feeling worse and worse. It got to a point where I dreaded the jabs knowing it would wipe out most of my week with nausea and hangover-type symptoms. Spoke to rheum, and after 13 months of taking it, I stopped the mtx completely: the small amount of benefit I’d been feeling had absolutely all come from the leflunomide anyway.
I realise your situation is different in so far as you’ve been getting benefit from the mtx, but if the side effects are that intolerable and it’s effecting your basic quality of life, then I would say try the switch. Out of all the DMARDs, lef actually has a very good reputation specifically for use with PsA, and I now take it daily alongside a biologic: it noticeably helped me, but just wasn’t enough on its own in my case. That may be because I’d been undiagnosed for 20 years in spite of active disease. Side effects wise, other than a headache for a few days when I initially started and with dose increases, I haven’t had anything particularly major. It does effect my white cell count, so I am a bit more noticeably prone to viruses compared to before, but it’s an immunosuppressant at the end of the day, so 🤷♂️
It certainly sounds as if you need a change of medication! Have a good read of the treatment pages on the NRAS website, ring your rheumatology nurse and discuss what you could do.
I have RD not PsA, the question remains appropriate though. I may be asking the obvious but are you taking enough folic acid to help ease side effects? I take 5mg 6 days a week, just not MTX day & it controls the nausea etc, I'm just a little more tired & have less appetite the following day.
This is my experience & of course may not be yours but I had to come off leflunomide because it caused peripheral neuropathy & a return of carpal tunnel. Don't let that or anybody else’s experience put you off though, you may do well on it. You won't know til you try.
Yes I take folic 6 days still get nausea and am only on 15 mg mtx
I’m afraid that I don’t have experience with leflunomide, but as my MTX dosage was increased to 22.5 mg, I started to struggle with nausea. My rheumatologist suggested that I lower the dose to 20 mg for a bit. That helped lessen the number of days I had nausea to one most weeks. She also prescribed odansetron/zofran, which has helped further ease the nausea so I can function a bit better. I wasn’t functioning so well before the MTX, so I’ve just been trying to deal with things, but as others have said (and hopefully I’ve implied), it’s worth talking things through with your rheumatologist, who might have thoughts on what medication/s is/are best and what else you can tweak to improve your quality of life. Best of luck!
Thankyou for my replies I will give rheumatoid nurses a ring.
i have PSA & mtx was added in alongside etoricoxib & hydroxychloroquine, I also had awful nausea & terrible brainfog that I started to think I had dementia, lefluminode was also added in, switched to mtx injections hoping this would help aswell as taking folic acid 6 days a week, in June I saw the consultant & said I'd had enough, I wanted my life back & not feel awful for 5 - 6 days a week, stopped mtx & sulfasalazine replaced it.
don't suffer in silence, speak to the rheumatology team
Sorry to hear that you are having such a tough time on MTX. I have RA and have tried MTX on two occasions over the years (for about a year each time) and had to come off of it because of awful side effects. I also didn't do well on other DMARDs. I have now been on leflunomide for 15 months and wish I had been put on it years ago. It has significantly reduced my CRP and ESR levels and I have not had a problem with side effects. I hope you are able to find suitable medication and wish you well.
Thankyou for your reply
Hi, RA for me and Benepali and Mtx. I’m had similar symptoms last year when on mtx tablets but my blood results were all stable so consultant investigated further. Also have severe OA which accounted for some of symptoms. I’ve got hormone imbalances at the moment and sorting that out has eased most other symptoms. So could be worth seeing if symptoms are mtx or something else? I’m still on mtx as bloods through it all remained stable for RA. Hope you find a solution
I gave rheumatoid nurse a ring and dr agreed to stop MTX and sending me a prescription for leflunimide ,starting me off on 10 mg. We will see .
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