Can effectiveness of Methotrexate decline?

[JulesCurrie]

I have been on methotrexate now for 20 years now and believe it’s effectiveness has declined . When I see specialist they just increase the dose now on 25mg. Because I had a urine infection and was repeatedly prescribed antibiotics on four occasions I stopped taking the methotrexate. I can say that my RA symptoms didn’t get worse for not taking MTX. Wonder how long does MTX stay in the system?

I want to try an alternative drug but as I said they just keep increasing the dose…is it because MTX is the cheapest drug to prescribe?

[Boxerlady]

I was gradually moved up from 15mg tablets to 25mg by injection when I was struggling (already on Hydroxychloroquin as well) but things only improved when Sulphasalzine was added. I requested to go down to 20mg as the hangover was lasting longer and longer and they agreed, with no increase in RA symptoms. Last year, the consultant reduced the Hydroxychloroquin but my joints flared so that was put up again. My joints are "ok" but no better than when I saw him last year ( when he said that there was improvement to be made) so I'm planning to ask about reducing the Methotrexate when I get my review - hopefully within a couple of months.

I won't be pushing to come off it as I'm sure that it's effective but I would like to be on the lowest effective dose to minimise the side effects.

I understand that it stays in your system for a long time and have found that, although I don't notice missing a dose or two, I do notice the difference beyond that.

It sounds like you need to request a review and be politely firm if you feel that you need to try another approach.

Hydroxychloroquin, for example, is said to be a relatively mild drug in itself but an "enabler" which allows Methotrexate to be more effective and my experience supports that.

[JulesCurrie in reply to Boxerlady]

I was on Hydroxychloroquine but came off it because of constant ringing in my ears .. even though I have been off it for 18 months the ringing has persisted … thanks for replying much appreciated

[MistysMum in reply to Boxerlady]

Hydroxyxhloroquine was added to my 20mg dose of Methotrexate, & was a real game changer. I felt better than I had for years. The only thing one has to be careful about is to have thorough annual eye checks at the optician, as there can be damage to the retina after prolonged use. I did also discover, quite by chance, after 10 years, that it should only be taken for 10 years, due to the above risk increasing after that time. It took my query to the Rheumatologist to bring it to her attention, otherwise I think I would still have been on it! It shows the importance of us being informed about our meds!

[nomoreheels]

I've not been on MTX quite as long as you, 14 years, but I’m still reasonably well controlled on that plus a low maintenance dose steroid, which I’m slow tapering. That will be the decider, once I reduce the pred to 2 mg, which has been the limit I’ve got to before things start to go awry. Despite trying on a few occasions I can't go any higher than 17.5 mg MTX so have tried double therapy with sulfasalazine & leflunomide, neither of which I can repeat. Hydroxychloroquine was my first DMARD so I have been on each of the mainstream ones over time. Being considered for biologics has been touched on by 2 locum Rheumys, from the perspective of me having been on steroids 13 years in order for me to remain controlled with MTX & the suggestion it would be preferable for me not to rely on them (!). Only at my last appointment was I eventually given the green light to attempt to taper to nil. So I'm at the waiting stage as I’m reducing by 0.05 mg every other month, down to 3.5 mg with another month until I attempt 3 mg.

I'm telling you all this as I don't think MTX has become less effective for me but as much as we're each different so is how long we retain MTX. I used to be able to pause MTX for 3 weeks before flaring but after a recent Covid booster I paused it for 2 weeks & flared. So from that perspective my body missed it for a shorter length of time. Our metabolic rates can determine how long it remains in our body, as well as BMI & form of administration. Are you on tablets or injections?

Ultimately it's a discussion you need to have with your Rheumy again I’m afraid. I'd be interested to hear how it goes if you'd be kind enough to update us?

[JulesCurrie in reply to nomoreheels]

Thank you for replying. Seeing specialist on Thursday so will update you .. I always feel as though they don’t listen and I am fobbed off …

[Pebblescat in reply to JulesCurrie]

I would be interested if this is your rheum nursing team or your consultant. I had a similar issue with my RA just getting worse and worse and just being offered more of the same drugs with very bad side effects. Eventually I said I wanted a reassessment by the consultant as it just wasn’t working. I’m mid way through a lot of tests now and will get the results with my consultant in March. Sometimes I think they get stuck in a rut and only offer what has worked for you in the past and don’t think beyond that. Also I’m sure the nursing team aren’t allowed to alter your medication. It has to be the consultant. If it is the consultant you are seeing take a firmer line. It is your choice. You can always ask your GP to refer you for a second opinion if needed. Sorry for the long reply.

[nomoreheels in reply to JulesCurrie]

I hope this Thursday's appointment it's different this time & you are listened to. Look forward to hearing more positive news.

[_Ollie in reply to JulesCurrie]

Hi, I keep a book, when I speak with anyone.. date, time. Who I’m speaking with - write what your question/ problem is……..then write up what they’ve suggested.

If it’s Nurse… then chase, if they’ve not returned your call! Should you have spoken with consultant, write it down.. ask him for his suggestions to Question.

When I have consultant appointment… either take your book.. or I’ve just written in a smaller book, briefly what’s wrong..what you need sorted! Trust, me it saves you thinking 🤔 when you’re there ( just in case brain fog!) it helps you to discuss yourself, problems etc! Works for me.. good luck 😉

[Neonkittie17]

I found the tablets waned (I was on the highest tablet dose) after 5 years but not the injections I was switched to. They were much more effective.

[Hidden]

25mg is the highest Mtx dose, but they may add Sulfasalazine to it, or something else.. People on here are on all kinds of things…

You could maybe have a google to find out Mtx half-life, or ask your chemist… I can go a day late, but nothing more than that….. If I don’t take my Sulf though, I notice straight away…

RA is degenerative, so maybe that’s why your dose has increased?? Maybe phone your Rheumy nurse for a chat..

[JulesCurrie in reply to Hidden]

thank you for replying seeing specialist on Thursday …

[Sheila_G]

I hope not. I have been on mxt for almost 21 years and it still works well for me. I had to stop mxt for 8 weeks once because of another condition and I was fine up to 6 weeks then it hit me like a brick. Please be careful when stopping any meds. Stopping mxt was horrendous for me but thankfully only temporarily as I could go back on it after 8 weeks. It took somd time to kick in again and I needed lots of steroids to help me to be able to get back to where I was before I stopped it.

[smilelines]

Methotrexate is the golden drug and is cheaper than the biologics so I think that is the reason why they like to use it. I know that leflunimide is very comparable in effectiveness and potency. My doctor told me that leflunimide might stop being as effective over time so I would assume that methotrexate would be the same. Leflunimide lasts a long time in a person’s system compared to the methotrexate. Have you been off the methotrexate for long? Both methotrexate and leflunimide are hard on the liver so I hope they don’t try to add that to your methotrexate.