Methotrexate and Leflunomide

[SpanishSenorita]

Hi. I have had RA for over 40 years (am 56 now) and am currently taking 5 tablets of Methotrexate each week. In the past I have had gold injections, hydroxychloroquine, and Sulfasalazine. My disease is active and my Rheumy has recommended I start Leflunomide also. I am concerned about taking yet another toxic medication alongside the Methotrexate, as some of the posts on here about the side effects of Leflunomide are pretty scary! Like lots of you I am in constant pain, particularly with my feet as I have arthritic nodules and have also developed tendonitis of the left achilles, which is very painful. I feel that I am between a rock and a hard place......any advice anyone?? I work 3 days a week which is proving quite difficult due to the pain as I am an Estate Agent. Thanks in advance.

[Stormpetrel]

Dear SpanishSenorita

After 40 years of suffering and still with active disease, should you not be offered drugs at the next level?

I completely understand about your concerns of Leflunomide, you should not be pushed into a corner. My advice would be to discuss options again with your Rheumatologist, it seems very unfair that this is the only option on the table. Can you talk to your GP? Second opinion comes to mind, even if it’s just to discuss drug options and the way forward, private or otherwise.

Wishing you all the very best

[SpanishSenorita in reply to Stormpetrel]

Hi. Thanks for taking the time to reply. I lived in Spain for 8 years and was in remission for 20, so everything was fine. Unfortunately on returning to England I was in quite a stressful relationship with an ex and my Arthritis flared up again. I don't qualify for biologics as a lot of my pain is in my feet/ankles and for the scoring for biologics foot pain is not taken into account for some crazy reason, (even though it can affect your ability to walk and even work!!). Have now been told to administer Voltarol for the achilles and am hoping for a referral to the Physio.

[Hidden]

That sounds awful, 40 years & still suffering with active disease, you poor thing. Totally with storm petrel: can they not offer you biologics after all this time? I don’t blame you on leflunomide either: I was due this & sulfa but offered benepali out of blue & so far it’s been a game changer 🤞. Rheumatologist said to me biologics tend to have far fewer side effects too (obviously all the meds for this aren’t risk free but what other alternative?) I really hope you get some respite soon x

[SpanishSenorita in reply to Hidden]

Hi. Thanks for taking the time to reply. I don't qualify for biologics as a lot of my pain is in my feet/ankles and for the scoring for biologics foot pain is not taken into account for some crazy reason, (even though it can affect your ability to walk and even work!!). I am glad that you are getting some respite on your Meds. x

[Hidden]

I’m completely with the others. After 40 years and still having active disease, one would think you’ve earnt the right to one of the newer treatments.

I feel for you, must be difficult being an Estate Agent when your feet are involved, and I’m guessing that comfy sneakers are probably not an option for showing a house - ouch!

[Shalf]

Hi there, this is outrageous that you are only at this level of medication after 40 years! I was at the stage your at a few years ago! I was put on hydroxy with methotrexate, didn't work so sulphasalazine was added then Leflunomide over a 6 month period! I was rattling but more than that I was still getting damaged joints and lots of pain. My stomach couldn't tolerate all those pills and I was frequently sick. Ask to go onto biologics, hell you deserve to! There is nothing guaranteed as you know with any drug but anything is worth a try for better quality of life. You shouldn't be in constant pain at this time! Are you in the UK?

[SpanishSenorita in reply to Shalf]

Hi. Thanks for taking the time to reply. I live in the UK now but have lived in Spain for 8 years and my arthritis was in remission then for many years. An ex/stress made it flare up again on return to the UK. Apparently I don't qualify for biologics as a lot of my problems are feet related, (although the RA affects my hands/fingers, wrists and left knee also.