MTX appears to have no improvement : I am supposed... - PMRGCAuk

PMRGCAuk

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MTX appears to have no improvement

Sunny1947 profile image
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I am supposed to be on 10 mgs of Prednisone but had to increase to 15 mg while in flare with PMR .We are travelling on a bus tour and the early mornings are brutal. In May my Rheumy also put me on MTX which is appearing to have no effect except interrupting my enjoyment of my evening wine .Are there any biologics that help PMR .. this is a 5 year journey and I am fed up☹️

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Sunny1947 profile image
Sunny1947
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Specialised profile image
Specialised

My experience is somewhat similar to yours Sunny1947. I was put on Methotrexate 20mg weekly around 3 months ago. I was finding it really hard to taper down from 25mg of prednisone. I feel like my Rheumatologist was moving too fast with the taper, but hey, I’m not the specialist. I have been able to get to 15mg, but when I dropped to 12.5mg , I began to flare. This also coincided with an overseas trip which involved lots of family, including young children. I would not recommend that!!!

My doctor has put me back to 15 mg for a week and then I am to drop by 1mg. I guess in relation to your thoughts on the benefits of methotrexate, I do wonder. Would I still be struggling at 25mg? I don’t know. This illness is so difficult to treat and so much is unknown. It would be great if there was something better to treat us and easy to access. More experienced people may have some answers regarding other medication.

piglette profile image
piglette

Methotrexate for PMR is a bit hit and miss. It was not really meant for PMR but rheumatoid arthritus, however it was found that it worked for some people.

PMRpro profile image
PMRproAmbassador

What country are you in? It does help to know for us to reply since some things are very country-specific and this is one.

There are biologics but not for PMR in the UK. I'm assuming you are in the USA since you refer to prednisone - in the USA some people with PMR have got Actemra but it isn't common as it is not approved for PMR, just GCA. Kevzara is FDA approved for PMR and being offered for PMR in the USA. It is not - and unlikely to be - approved in the UK. However - biologics cost IRO £12,000 a year so if you don't get funding - it is expensive.

MTX can take up to a year to show a benefit on reduced pred dose for PMR though if it is going to work it is usually obvious after a few months. May to now is about when you might expect to start feeling the benefit.

It might help for your bus tour if you took the pred before bed so it is working by the time you get up. Or you could split the dose to achieve better mornings - 2/3 with breakfast and the rest late enough to extend the antiinflammatory effect to the full 24 hours.

Alliekat65 profile image
Alliekat65

Hilike you I am on both. my pred journey has been up and down and I'm now on 12.5 going down to 10mg next week. from 60 at its height in feb

I from the MTX has kept my side effects at bay. but not great on my tum. but I've only been on for 4 weeks.

saw eye clinic today no change in vision I have GCA and partial loss of sight

I think the doctors try but theese 2 disease are conflicted and one doc says A Whilst another day B ..

IM sorry its been so long for you

and I hope it settles down all I can say is my pred went up and down so .any times I even forgot wat iwas taking

Nanna71 profile image
Nanna71

Hi Sunny,

Same age different diagnosis. RA for me. Methotrexate (25mg per wk). This medication took a year before I knew it was working. The estimate is around 6 months. THEN I could start reducing the Pred. which took another year to get off. Now I am in remission. Glad I stuck with the MTX because it is doing a great job. Patience is what you need because the way it works (or when it works) is different for each person.

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