Methotrexate is there an end ?

[Musiclady18]

I have been on Methotrexate since August 2021, I started my PMR journey in November of 2018. I find the Methotrexate has relatively good for me. Saw my rheumatologist June of this year and my next appointment is June of this year. My ???? is am I on Methotrexate for life or how does that work? Lately I have noticed my stomach has been bothering me after the methotrexate dose and folic acid ??? Any help would be appreciated.

[PMRpro Ambassador]

Are you also still on pred?

[Musiclady18 in reply to PMRpro]

No only methotrexate and folic acid

[PMRpro Ambassador in reply to Musiclady18]

It seems to depend on the doctor. Some will leave you on MTX for some time and then stop it - I don't know if they taper it by reducing the dose first, there is no need to do that but maybe it softens the effect of withdrawing it. Some just stop it. Some maybe leave it longerterm. Honestly don;t know which might apply to you. RA patients stay on it until it stops working for them as it often does. But PMR is a different kettle of fish - it usually goes into remission on its own anyway.

[Musiclady18 in reply to PMRpro]

Thank you PMR pro for your quick reply! I guess I will have to wait and see what my rheumatologist decides in June ??? and hope my inflammation levels are relatively stable ?

[PMRpro Ambassador in reply to Musiclady18]

Indeed. How long have you been off pred?

[Musiclady18 in reply to PMRpro]

August 2021, the rheumatologist took me off prednisone and started me on the methotrexate

[PMRpro Ambassador in reply to Musiclady18]

Are you sure he doesn't think you have an inflammatory arthritis? MTX doesn't often work like that in PMR. It does work brilliantly for some people - but in the early stages of LORA (late onset RA) it can be impossible to distinguish between PMR and a polymyalgic presentation of LORA.

[Musiclady18 in reply to PMRpro]

No she has never mentioned inflammatory arthritis to me? What do you refer to when you say "mtx doesn't often work like that in PMR?"

[PMRpro Ambassador in reply to Musiclady18]

It isn't a REPLACEMENT for pred in PMR - it is usually used in the hope of suppressing the immune response to some extent so that less pred is required but that is usually only a matter of a few mg, sometimes more, In some patients it smooths out hiccups with tapering. But it is extremely unusual for a patient to be taken off pred and then started on MTX and have no symptoms at all.

[Musiclady18 in reply to PMRpro]

Thank you for that explanation. My rheumatologist did say that methotrexate does not work for everyone and she was happy that it was helping me?

[PMRpro Ambassador in reply to Musiclady18]

It is such a shame they don't look at a cohort of people for whom it worked well to see if there is a link, It is still a case of suck it and see.

[Hightower62]

Hi, my story is similar to yours. I started taking Prednisolone in 2020 after initially being diagnosed with suspected GCA although this was not conclusive.

I started on MTX after about 3 months then continued on Pred for around 28 months before discontinuing.

My symptoms have been fairly well controlled and bloods mostly okay. I was re diagnosed early last year with PMR and ‘likely LVV’ and my MTX dose was reduced from 20mg to 15mg with no adverse effects

[Musiclady18 in reply to Hightower62]

Thanks for your reply. I guess I'll wait to see what the Rheumatologist says?

[Ozziedays]

Hello my PMR was diagnosed and mostly treated in Australia but on transferring back to UK the NHS rheumatologist seemed to be in agreement with my overall plan.

I started MTX after two flares at around 4-5mg pred. A year later I got to zero pred with no further flares. I was on the point of returning to the UK and asked my Australian rheumatologist what her plan would be going forward assuming I continued in good health. Her approach would have been a further 18 months on MTX, tapering off towards the end.

I saw an NHS rheumatologist about 8 months later and she was in agreement with this plan. However, 2-3 months later my bloods started showing slightly raised liver enzymes and so I was off / on MTX for repeat tests. After a couple such episodes, and having already reduced my weekly MTX from 20mg to 10mg, it was agreed between my GP and the rheumatologist (my GP practice has a shared care protocol for PMR with the hospital rheumatology department so that was very helpful) that I simply stop and see what happened. That would be about a year after reaching zero pred rather than the planned 18 months. What happened was that I’ve been absolutely fine since, about 14 months now. It does seem to be a very individual thing but hopefully my experience will be of interest.

[Musiclady18 in reply to Ozziedays]

Thanks for your reply. I guess I'll wait to see what the Rheumatologist says?

[Suet3942]

Hi. I was put on MX about 10 years ago at a low dose of 10mg per week. I am now down to 2mg pred and decided to stop the MX to see what happened. That was in September last year. I feel ok without it. I continued the folic acid 6 days a week as I’ve been shedding hair but started getting problems with stomach pain. I stopped the folic acid and my stomach pain stopped as well. I’m so pleased that I’m taking less meds. Perhaps the MX helped when I was first prescribed it. I hope to stay at 2mg pred for life

[Musiclady18 in reply to Suet3942]

Thanks for your reply. I guess I'll wait to see what the Rheumatologist says?

[Badmoon1]

methotrexate and folic acid 22years

[Musiclady18 in reply to Badmoon1]

So no stopping for you ? Is it affecting your stomach or taste once in a while?

[Badmoon1]

It started for Psoriatic Arthritis; I don't see difference for PMR. Stomach issues with Pred. Taste difference with Covid.

[Musiclady18 in reply to Badmoon1]

thanks !