Sally: Consultant says he wants me to take... - PMRGCAuk

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Sally

SallyJCollings profile image

Consultant says he wants me to take methotrexate but reading about it, I'm reluctant. It feels like the slippery slope - take one drug to deal with the effects of another drug...

Any comments?

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SallyJCollings
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14 Replies
SnazzyD profile image
SnazzyD

Hello and welcome. To help us give meaningful comment, could you give some detail? Do you have PMR or GCA? If so, how has your recovery been and what doses have you been on and over how long?

PMRpro profile image
PMRproAmbassador

Hi and welcome now you have some out into the open!!

First of all - can I ask you not to use your name as the title of your post - use a sentence that indicates what you are asking about. This has two benefits - more people are likely to look and it will usually bring up a list of Related Posts about the topic to start your reading. And please tell us in your bio on your profile a bit of history about your diagnosis and adventures with PMR - or is it GCA? Is it a long or short journey, are you struggling to reduce the pred dose, how have you tried to taper? All things that are very relevant for explaining whether you should or shouldn't consider methotrexate. MTX and means we can always look back to check so we don't utter irelevancies.

Unlike the other medications like a PPI, calcium and vit D, a bisphosphonate etc that ARE aimed at dealing with the side effects of pred, MTX is a different thing altogether. Some rheumies are convinced it will get you to a lower dose and even off pred altogether much faster. And indeed it can for a small cohort of patients - but it is a fairly small proportion.

It has its own adverse effects which can be considerable and there are NO guarantees that it will indeed get you off pred. If you have been stuck well above 10mg pred for months then there are grounds to support trying MTX to see if it will allow you to taper. Or if you have really severe adverse effects due to pred - though most can be managed/mitigated when you know how. But if you have got to a reasonably low dose on your own or it is very early days and still above 10mg - many of us question why it is pushed so hard without good study evidence to show its benefits.

So do tell us a bit more - and start a good discussion.

SallyJCollings profile image
SallyJCollings in reply toPMRpro

Thank you

HeronNS profile image
HeronNS in reply toSallyJCollings

You can edit your post, including the title. At the bottom of your post there should be a little arrow pointing down, and if you click on that you get an option to edit.

Methotrexate is often offered as a way to help people who've been having difficulties tpering pred. It helps some, not others, and the only way to find out it is to try. But if you are on pred and so far not having any problems (except maybe not tapering as fast as you doctor wants you to) then we'd agree there's no point adding another med, along with its own little set of side effects, to the mix.

Alliekat65 profile image
Alliekat65

hiI've been injection with methotrexate for several weeks to taper fast as the pred had side effects. I don't find any probs with it tbh. but they 1st started me on pills and more poor tum couldn't cope

I guess all of this is scary all the best

PMRpro profile image
PMRproAmbassador in reply toAlliekat65

Beware though - MTX doesn't guarantee you can taper faster. Even the study that supported the concept it could reduce the cumulative dose found it took a year to see a significant difference.

Alliekat65 profile image
Alliekat65 in reply toPMRpro

oh grief ill look like a pin cushion

PMRpro profile image
PMRproAmbassador in reply toAlliekat65

I've been injecting another drug weekly for a couple of years - trying alternate weeks at present, seems to work so far. No pincushion - just think of diabetics, finger pricks AND injections!

Ozziedays profile image
Ozziedays

Hello, as others have said, a bit more detail would help to give us to give you a more focused reply. For what it’s worth, I started on 25mg pred for PMR and had successfully tapered down to about 4.5-5mg when I flared twice so my rheumatologist suggested adding in MTX at 20mg weekly. One year later I got to zero pred, and a further year later zero MTX. That was a year ago, and all good so far. I took the tablet form and had no side effects that I noticed although towards the end I had occasional slightly raised liver enzymes in my routine blood tests - which brought forward the plan to taper off MTX by a few months. Hope this may be of interest and wishing you well

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

States on your profile GCA, with a joining date of 2018…. Does that mean you still have GCA after 6 years. If so, perhaps we can understand why Rheumy wants to add in MTX, but as already said a bit more info would help, we area working in the dark at the moment.

howtotaperdown profile image
howtotaperdown

my GP advised me not to do MTX (my rheumy seemed impatient for me to do it) although on pred for 30 months and repeatedly getting stuck at 6mg,

GP's advice based on fact that I had raised liver enzymes with mild statins some years ago and had to stop them after 6 months and she didnt see it as a wonder method anyway

PMRpro profile image
PMRproAmbassador in reply tohowtotaperdown

Sensible woman - especially if you were almost at 5mg anyway.

CSMM profile image
CSMM

I’m not sure if theirs enough evidence to suggest it actually works for PMR be interesting to see if anyone on here has had any success

PMRpro profile image
PMRproAmbassador in reply toCSMM

MTX works brilliantly for a small cohort of PMR patients - trouble is, you have to try it to find out if you are in it. Given the high rate of misdiagnosis by GPs, is it possible they didn't have PMR at all but an inflammatory arthritis with a polymyalgic presentation? Very often the exact pattern of the response to pred gives a hint - it works fairly well but a bit slower and tapering is difficult for example. Prof Sarah Mackie is in the middle of a study looking at its role - but to be honest, I doubt they will get clearcut results - not until they can definitively diagnose PMR at least. There are quite a few on the forum who have had some success, But also some for whom leflunomide or hydroxychloroquine have got them off pred entirely - but they are far less often proposed than MTX.

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