Reducing Methotrexate

[Pythagorus]

I am trying to wean myself off Methotrexate with the help and advise of the rheumatology consultant.I am also on Benepali. I reduced from 25mgs to 20 mgs over the last three months and was hoping now to reduce to 15 mgs but after discussion with the nurse today was advised to stay on 20mgs for another three months as I had had a small flare in my hand at the beginning of March.I have to have had three months with no flares before I can reduce further. How has anyone else got on with reducing your meds?

Also had a call from GP today. I have been diagnosed with atrial fibrillation and have now started beta blockers and anticoagulants!

The good news is that I feel as fit as a flea and looking forward to playing golf tomorrow 🤗😊

[helixhelix]

I’m down to 12.5mg! Our aim is 10mg, but further reductions on hold as my Enbrel (Benepali) seems to have stopped working so about to change to another biologic.

[Pythagorus in reply to helixhelix]

Thanks for your reply HH. You say that the Benepali is not working but how do you distinguish between that and perhaps the Methotrexate dose now being too low?

[JEM95]

I’m on a journey to reduce my methotrexate too, since starting Benepali.I was on 22.5mg MXT and have gradually decreased to 10mg - but that seems to be a step too far! I was fine on 10mg for about 4 weeks but am really suffering now.

I was hoping to go back to 15mg but because I have a naughty liver with raised LFTs my MXT can’t go up again.

I’m going to have a steroid injection (hopefully in the next few days), then after a trip to the ophthalmologist start back on Hydroxychloroquine, which I stopped taking when I started on Benepali.

I’m struggling but at least I know how fab it will be when my drugs get balanced again,

It’s definitely a case of you don’t appreciate how well something is working until it stops working!!

Good luck with your journey of reduction x

[AgedCrone]

With your other health conditions you can really only rely on your rheumatologist’s advice……presumably you have told rheumatology about them?

[Pythagorus in reply to AgedCrone]

Mais our 😊

[Pythagorus in reply to AgedCrone]

Predictive text is so I unpredictive! Should say mais oui. Oops

[AgedCrone in reply to Pythagorus]

d’accords- J’ai compris

[Boxerlady]

I'm not on a biologic but triple DMARDS (Methotrexate, Hydroxychloroquin and Sulphasalzine) I was on 25mg Methotrexate before adding Sulphasalzine but found the side effects had increased a lot after going up from 20mg so after it felt like the Sulphasalzine had kicked in, I asked if I could go back to 20 mg which I did with no problems. Recently the consultant reduced my Hydroxychloroquin from 400 to 200 mg with a view to coming off it next year as he felt that the other two were doing the job but within a few weeks I went into a flare. It was increased again and things are settling down. It's interesting as we had both assumed that the Hydroxychloroquin wasn't doing much but apparently we were wrong. It will be interesting to see what he says at my next appointment...

[Garnacha in reply to Boxerlady]

When I was first prescribed methotrexate the consultant said to stop hydroxy, within a few days my whole body went into a flare, restarted it & took months to get back to where I was before, similar thing happened when I stopped etoricoxib (my decision & before PsA diagnosis) I'm pretty scared & reluctant now to stop any of them 🙄 as you've said you don't realise how much they're working until you stop

[stbernhard]

I was down to 10mg of MTX for a year. As I had three minor flares it was increased to 12.5 again(with my agreement). So I think what your rheumatologist says makes sense. I hope you feel well today.

[Pythagorus in reply to stbernhard]

Thanks St B I am feeling good

[CagneysMum]

I’m on Amgevita, Hydroxychloroquin and Methotrexate and after being ‘well’ for 18 months I discussed removing Hydroxychloroquin from the mix with my rheumy team - I only take one tablet a day. They advised keeping the triple therapy going for now but to reduce the methotrexate which I did about 2 months ago and all good 👍 Reduced from 20mg to 15mg. Hoping to reduce it again in due course but I’m so pleased so far - a world away from the sorry state I was in only 2 years ago 😁

[Dodo1943]

I only ever suffered the one major flare that totally incapacitated me and led to diagnosis confirmed in April 2016. Methotrexate tablets were prescribed in 2 week stages from 7.5mg; 10mg; 12.5mg; 15mg and ultimately 20mg in Sep 2016.

In July 2018 I instigated a reduction of 2.5mg which was approved and, similarly, a further reduction 3 months later brought my prescription down to current 15mg.

My only regret is that MTX cost me my natural curls!