Ceasing Methotrexate?

[AmbientB]

I have been on methotrexate since late August 2023 as a steroid sparing strategy (started prednisolone at a high dose in early July 2023).

I don't think the methotrexate is now doing much good. My current prednisolone dose is back to 16 mg, after a couple of flares starting from the end of November last year when I got down to 9.5 mg of prednisolone and the CRP shot up.

Stomach issues are increasing and seem to be related to the weekly dose of methotrexate. Certainly the two days or so after the dose can result in lethargy and limit severely what I can do.

My question is whether anybody's PMR has worsened when they ceased taking methotrexate?

(My doctor is reluctant for me to cease methotrexate as he is 100% certain it's a very effective medication for PMR, and that everybody with PMR will benefit from it if they find tapering prednisolone difficult- despite the research that shows it's not successful for a lot of people).

[PMRpro Ambassador]

Doesn't sound to me as if it is doing a lot for you - not even reducing the flare problem which it does for some even though they can't get to significantly lower pred. There ARE people who stopped MTX because they thought it wasn't helping only to discover it was having some effect.

I wonder why some doctors think they know better than the rest of their colleagues ...

WE know that it isn't 100% effective in PMR and I know a few top PMR experts who admit it MAY help but it is only a limited cohort who really benefit brilliantly. If you can't get under 10mg after 18 months of MTX, I don't think that supports you using it longer if it is causing adverse effects that impair QOL.

[AmbientB in reply to PMRpro]

Thank you. I have been thinking along the same lines although always come back to thinking the doctor must know best. But the point you made about it being 18 months and not getting below 10 mg is a very pointy one indeed and not something that had immediately sprung to mind.

[PMRpro Ambassador in reply to AmbientB]

And there is a recent publication rubbishing it in PMR

rheumnow.com/news/say-goodb....

I am fairly sure that the patients who do well with it are late onset RA that was dx'd as PMR - it is very easy to do, they can appear identical.

[DorsetLady PMRGCAuk volunteer in reply to AmbientB]

. I have been thinking along the same lines although always come back to thinking the doctor must know best.

If only... and for the record agree with PMRpro.. MTX not doing you much good.

[AmbientB in reply to DorsetLady]

Thanks. And it does seem obvious it's not doing me much good; I think I should convince the doctor that I stop it for a while and see if the CRP goes up. One of the issues we have in Australia is that presently it's difficult to get access to any other medication for PMR unless you also have active GCA. Then Actmera is available. And even though some of my initial symptoms were looking like it could have been GCA, the initial higher doses of prednisolone resolved that.

[DorsetLady PMRGCAuk volunteer in reply to AmbientB]

Same here in UK re Actemra not being available for PMR.

I’d go for stopping the MTX for a few months, and see what happens. Last time when you had high CRP what other PMR type symptoms did you have? Bloods aren’t the only, nor necessarily the overriding reason to increase Pred/add in another drug. It’s a non-specific test.. just shows raised inflammation- not the cause.

[AmbientB in reply to DorsetLady]

Pain in all the classic areas: neck, shoulders, hip girdle and upper thighs - and much more susceptible to DOMS. Since the onset of the PMR, the CRP has tracked quite well with the pain levels. If the CRP is higher then the pain will be more intense and tiring. Although when the CRP has been at "normal" levels, it has been difficult to get the doctor to understand that it doesn't mean there is no PMR pain, just that it is more manageable.

[Smithie49]

Hi. I have just stopped taking methotrexate as I was fed up with feeling exhausted much of the time. I'd been on it for 15 months. After 11 months I'd flared every time I tried to reduce below 7 mg pred so my rheumy increased the dose of metho to 20mg weekly. I was on that until this March when I decided I'd had enough. I'm not sure I'm feeling any more lively but I certainly don't feel worse and I've managed to reduce my pred to 6.5.

[AmbientB in reply to Smithie49]

Thanks. It's good to hear that you don't feel any worse and you have managed to reduce. If it's not currently contributing anything positive then I think that stopping the MXT at least reduces a potential source of side affects,

[PMRpro Ambassador in reply to Smithie49]

It took a good 4 weeks before I started to feel better but within another few weeks I was noticeably better.