Saying goodbye to Methotrexate

[1951grumpa]

This is an article I read I Rheumatology Now saying goodbye to methroxate in PMR::::::::::::::::Although I read it but only grasped some of it. It’s a short read:::::::::::rheumnow.com/news/icymi-say...

[SheffieldJane]

Interesting, glad I swerved it.

[BlueKiwi]

Interesting, but nothing on side effects. After I had repeatedly failed to stay at a level lower than 7mg, my rheumatologist offered me methotrexate and leflunomide. I declined, preferring to keep trying instead, and he made no attempt to push me.

Then when I phoned him to say I had finally managed to stay low and get the adrenals started, he was happy that I had "avoided the horribly poisonous methotrexate and leflunomide". His words. I assume that all doctors are required by protocol to offer "normal" treatments, even those they don't like, as failing to do so would amount to malpractice. So it's down to us as patients to make the final choice.

[PMRpro Ambassador in reply to BlueKiwi]

Makes a change from me being assured that "given the choice, all rheumatologists would prefer methotrexate"!!

Did he offer you one or the other or both together? LEF absolutely terrifies me!

I've never been able to find it again but I read a paper where the opinions were sought from rheumies and patients about MTX as a medication. About 95% of rheumies claimed it was wonderful, very effective and patients rarely complained or stopped taking it. In contrast, patients disliked it in general (any woman experiencing hair loss is hardly going to be keen are they?) but in concrete terms, about a third discontinued it because it didn't work, a third discontinued it because the adverse effects were simply too much and only a third said it had helped them but even then, some weren't happy. And the question was asked - how could the perceptions be so diverse?

[BlueKiwi in reply to PMRpro]

I declined the offer straight off, so it didn't get to the point of a concrete plan. And it was made in terms of "we've tried everthing else, so let's talk about ...". I think many patients, and even GPs, are afraid to say anything remotely adversarial to a specialist and consequently these specialists, especially the younger ones, have only the book to go by. I'm lucky in that mine, lovely man that he is, has a long career behind him and has seen all that there is to see. And, crucially, is open to conversation.

[PMRpro Ambassador in reply to BlueKiwi]

Sounds like a keeper!! I like any doctor who will include me in a decision and discuss it with me/

[Devoid in reply to BlueKiwi]

Poisonous was just how I described both methotrexate and leflunomide , they seemed okay for a few weeks and then just a total toxic effect on me. I’m aware some have taken it with good results but my own experience was that the side affects were worse than the illness itself

[PMRpro Ambassador]

I posted about this work a few weeks ago but this is a great addition since my post was merely highlighting a few minutes in a podcast that someone else had mentioned in a reply to another methotrexate discussion. This has a lot more detail.

I have said for years it isn't a reliable option. I do agree with Prof Mackie (who is also doing a study, why on earth don't they get together and save reinventing the wheel?) that it works brilliantly for some (I wouldn't say 1 in 3 mind you) but I suspect they are almost always misdiagnosed LORA or other inflammatory arthritis patients.

I think the use of MTX in PMR stands alongside the idea that PMR lasts 2 years as urban myths in the world of PMR. A bit like the emperor's new clothes. Not a lot of substance!

[LemonZest11 in reply to PMRpro]

I forwarded it to my Rheumatologist who was most appreciative.

[emowbray]

Thanks for posting that. Timely as I am due to have a discussion with rheumatologist and I think he may suggest methotrexate. I will now decline.