Time to give up methotrexate?

[Marijo1951]

I have been taking methotrexate since December 2017 because my GCA flared twice when I was trying to reduce pred below 25 mg per day. My first MTX dose was 10 mg per week, increased after a month to 15 mg. I haven't had any further flares since taking it and my blood test results have always been satisfactory.

A couple of months ago, after becoming rather disenchanted with MTX, I spoke to a rheumatologist about the possibility of giving it up. She strongly advised against doing that, but grudgingly agreed that I could reduce the dose to 10 mg per week, which I did without any noticeable repercussions so far. I had become uneasy about taking MTX because a flesh wound in my leg had taken a good four months to heal after becoming infected and leading to cellulitis, despite several courses of very strong antibiotics. I wasn't pleased to find out later that I should have been advised to stop taking the MTX while on the antibiotics.

I'm now feeling peeved because the combination of pred (only 5.5 mg per day at present) with MTX means that I'm in the ''shielding'' category during the COVID-19 crisis. I don't like feeling extra vulnerable and especially don't like being discouraged from taking a daily walk. I'm going to try to talk to a rheumatologist or rheumatology nurse tomorrow about stopping MTX altogether, but realise that it's likely that nobody will be available. I could also try talking to a GP but they probably wouldn't be willing to authorise giving it up as they aren't able to prescribe it in the first place. I have one dose left (for next Friday) and I'm seriously considering not taking it, seeing how things go and then taking it and getting a repeat prescription only if I have any sudden flare in symptoms. I'd be grateful for any advice or comments about going it alone in this way.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry cannot advice - have no experience of MTX, but people do seem to come off it without too much of an issue.

I suppose you could do as you suggest - not take this week’s dose- see how you feel - at least you would have that dose available if it all goes to rats.

I would put in for repeat prescription just in case it doesn’t work out for you, then you are covered.

[Londonblue]

Hello Marijo

Like you, I’ve been on MTX since December 2019, having tried and failed several times to get below 7mg Pred (I was diagnosed with PMR 7 years ago). I have used DSNS to reduce to my current dose of 0.5 mg pred and am also taking 10mg MTX weekly (I reduced in March from 15mg, after consulting the nurse).

About 18 months ago, I caught a nasty stomach bug and I felt that MTX might be worsening the situation. I contacted the rheumatology nurse, who said it was unlikely to be the MTX but I could miss that week's dose and see if it resolved. Missing the dose didn’t resolve it, however I had no ill effects from the missed dose, so it’s probably worth a try.

[PMRpro Ambassador]

Some people find mtx makes it easier to reduce the pred dose, others find it makes no difference. Some get to a lower dose of pred - others don't. Some who get to a lower dose but have to stop the mtx for some reason find they need a bit more pred, others don't. It really is a very individual thing. It is possible to just stop mtx - and the effect seems to hang on for a few weeks before you notice a difference.

[ignatz]

have been advised by 'my' rheumatologist that MTX- Methotrexate- stays in the system for about one month; perfectly fine to stop MTX if there is any infection. MTX is an immunosuppressant so it reduces our immune response AND makes it less likely that our bodies will deal with infection. PMR is our immune system running on overdrive and causing painful inflammation. This is due to our hormone system not working properly- possibly due to stress or ...? Our adrenal glands should naturally produce Cortisol in the early morning to damp down our natural overnight immune system activity which is on to repair damage from the previous day and guided by our Circadian rhythms. Prednisole replaces the missing natural Cortisol. MTX reduces our natural immune response so less Cortisol required to damp it down. ...is my understanding.

I feel for you "..I don't like feeling extra vulnerable"....but it appears to be a common symptom of getting old (which often leads to death!!!)

[PMRpro Ambassador in reply to ignatz]

There are people who adhere to that explanation - currently there is no evidence that poor adrenal function causes PMR though I think there is a study looking at the concept.

[ignatz in reply to PMRpro]

Huge apologies. I am not an expert and have no medical training at all. It is extremely likely that anything I write is wrong.

[PMRpro Ambassador in reply to ignatz]

No, no, no apologies needed - a former member propounded the theory consistently! They claimed there were doctors who believed it too! I did ask a UK expert in PMR and she knew of no real evidence. And there is a movement to start a study about it.