has anyone been prescribed Methotrexate for PMR? - PMRGCAuk

PMRGCAuk

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has anyone been prescribed Methotrexate for PMR?

Hephzi profile image
13 Replies

I am tapering from prednisolone and my rheumatologist suggested if I still get pain we can try methotrexate. I am not keen at all. Can I refuse and stay on prednisolone?

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Hephzi profile image
Hephzi
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13 Replies
piglette profile image
piglette

Yes of course you can say no. Methotrexate does seem to work for some people, but certainly not everyone.

PMRpro profile image
PMRproAmbassador

You can refuse, yes. There is increasing evidence that it doesn't make a significant difference in most people and there are a couple of posts in the last couple of days about a recent study that seems to be convincing quite a few rheumies. It is discussed at about 49 mins in the video.

healthunlocked.com/pmrgcauk...

There seems to be a small group of patients for whom it achieves a brilliant result, as can leflunomide and hydroxychloroquine, but I (and others) suspect that they are amongst the patients who have a polymyalgic presentation of an inflammatory arthritis of some sort which is where these drugs do better. But to be fair - you do have to try it to find out if you are amongst the select few.

msdale profile image
msdale

I'm in the same boat. So far, I'm refusing the methotrexate. The video mentioned by PMRpro below is quite informative.

Angelsmummy profile image
Angelsmummy

MTX. Not for me,horrid side effects,am on pred alone,tapering very very slowly.Everybody different ,has to be your choice H. Good luck with what you decide.xxx🎄😜

Ozziedays profile image
Ozziedays

Hello, it seemed to help me but it’s all very individual.

I’d been on pred for about 9 months starting at 25mg and was struggling to taper below about 4-5mg. Interestingly, I had no pain at all or any other symptoms, but my CRP and ESR rocketed up twice to way higher than they had even been at diagnosis. This was picked up in routine bloods and I was called in by my rheumatologist who recommended trying MTX. I took 20mg weekly alongside pred, got to zero pred about a year later and off MTX about another year down the line. I didn’t notice any side effects from MTX. Off everything for a year now and all good so far.

Hephzi profile image
Hephzi

thanks all. I had my appointment yesterday and he is happy for me to keep tapering and go back if it becomes an issue. I have some pain but nothing like before I took pred. So fingers crossed.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toHephzi

I have some pain but nothing like before I took pred

Might be useful if you told us what pain.. and what dose you are on now. As you’ve only had PMR for about a year, it’s still very much alive and kicking, and the issue may be as simple as too low a dose of Pred.

There is nothing in your bio to indicate age, gender, whether you are in employment or retired, lifestyle, tapering plan - all can have a bearing on how well your illness is managed.

Hephzi profile image
Hephzi in reply toDorsetLady

Thanks. I will try to update the profile. I am female and 53. Rheumatologist won’t diagnose PMR as says I am too young but says it’s a polymyalgia type condition and treats me with pred. I work full time in office/work from home job. I have had PMR pain since early summer 2023 but diagnosed a year ago. Currently on 2.5mg from 15mg a year ago and advised to taper slowly. I get some shoulder/upper back pain. Some hip pain and upper leg pain. Last year I could barely move at all.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toHephzi

Thanks, few comments - not necessarily in any order

You are not too young to have PMR, it is now recognised that many have it in their 50s and also in their 40s

To be at 2.5mg after only a year is too fast a taper,

Working makes managing your PMR more difficult,

To be on then correct dose of Pred for your illness is better than being offered another drug with its own issues.

Think your Rheumy needs to review the information re age and rethink your diagnosis

This CKS from NICE does state this on Summary page -

Older age — the highest incidence is in people older than 65 years of age. It is seldom diagnosed in people younger than 50 years of age.

And under Management does quote -

From age 40 years onwards.

cks.nice.org.uk/topics/poly...

Perhaps have a read through - and forward to Rheumy.

Final comment, if you are still getting pain, then more Pred required ..can you try 5mg for a couple of weeks and see if it makes a difference?

PMRpro profile image
PMRproAmbassador in reply toHephzi

I think that is nit-picking - apart from the fact that you are not too young. PMR isn't the disease - it is the name given to a set of symptoms with an underlying cause for the inflammation. And it responds to pred. You actually fulfil 3 critieria for it so he is being a bit silly.

Hephzi profile image
Hephzi

I will check out the video though, thanks. Good to keep up to date with it.

Musiclady18 profile image
Musiclady18

I am one of those fortunate to be able to switch from prednisone to methotrexate for my PMR and for the last 1 1/2 years it has been better than the prednisone, re: side effects. As the others say you don't know if the methotrexate will work for you until you try, but it is up to you! Good luck !

KASHMIRI1 profile image
KASHMIRI1

Sorry bit late to reply but just wanted to say that the side effects of methotrexate

are much less than I had with pred. Also if you do take it it takes up to three months to work and you don't have to taper it if you stop like you do with pred.

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