methotrexate : Had raised inflammation for 4 years... - PMRGCAuk

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methotrexate

animalactivist profile image
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Had raised inflammation for 4 years

Diagnosed polymylgia 4 yrs ago. Refused to take steroids as I'm also bi polar so didn't want mood altering steroids. Saw rheumatologist last week and she said leaving the inflammation untreated I'll be causing problems to my heart and other organs so I've been prescribed methotrexate. Any one on this? Comments please.

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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Not sure if you’re in UK or US, but most people taking MTX take it alongside steroids, as an aid to taking a smaller dose of Pred.

As far as I’m aware MTX by itself does nothing for the inflammation caused by PMR.

Yes your rheumy is correct, if left untreated then the inflammation caused can lead on to more serious problems including PMR’’s bigger and more serious sister GCA.

PMRpro profile image
PMRproAmbassador

If it really is PMR then it is not very likely that methotrexate will achieve a lot - but you can always hope. As DL says, it is more commonly used to reduce the dose of pred required.

Untreated PMR is more likely to progress to GCA - and then you are risking your sight. Like you I had 5 years of PMR without pred because it wasn't diagnosied and it didn't progress in that time.

If you are in the USA you do have an option in the form of Actemra - although it does seem that it may not eliminate the inflammation entirely.

piglette profile image
piglette

I believe there are people on this discussion board who are bi-polar and take pred. I am not sure how many people have the side effect of mood change, I know I did not, you will not know until you try and you can stop taking them immediately if you have only been taking them for a week or so. If the steroids do not work in that time it may not be PMR. Your rheumatologist is correct and you may also contract GCA which causes blindness. Methotrexate can be taken with steroids and in some helps the reduction process. Methotrexate is unlikely to work by itself if it is PMR.

SheffieldJane profile image
SheffieldJane

I really feel for you with this dilemma. You must be in so much pain, with restricted mobility too. Can your doctors not put their heads together ( Rheumie and Psychiatrist put their heads together and come up with a suitable treatment regime for you, with a contingency plan if your mood becomes imbalanced? This is discriminatory and not good enough. How do you manage?

Methotrexate is an Arthritis drug, sometimes used alongside Prednisalone to enable users to wean themselves off steroids. I doubt that it would help much on its own. It also has significant side effects. Nobody wants to take steroids, but believe me, the relief is huge.

SnazzyD profile image
SnazzyD

Hello, a tricky dilemma indeed. As has been said, there are those with bi-polar on here and others taking medication. Another way to look at it is that the doses to treat PMR (max 25mg but prob less) are a lot lower than to treat GCA (40-60mg to start but some have to go higher). Your chances of a clash with your bi-polar will be much higher if you risk progression to GCA so it might be worth biting the bullet now. You never know, it might be fine once your body gets used to it. Just think of the positive side of having your symptoms relieved.

Hi, yes I am having my steroids slowly replaced by Methotrexate which means I do have to take some other replacement drugs such as calcium and trimethoprim + sulfamethoxazole., also Folic Acid. All going well . I do have PMR + GCA.

PMRpro profile image
PMRproAmbassador in reply to

I really do have to say that if using methotrexate meant I also had to take trimethoprim and sulfamethoxazole (Bactrim by any other name) you would have to force them all down my throat. The idea of using methotrexate is to have fewer pred side effects - and since mtx alone was 10 times worse than anything I've ever experienced with pred adding the other 2 would be a real no-no. Bactrim is horrible.

Janstr profile image
Janstr

My PMR was undiagnosed for 10 months & progressed into GCA & was also starting to cause heart and lung issues. Steroids gave very welcome relief within 12 hours. After I had a flare my Rheumoltolgist wanted me to go onto methotrexate to help reduce the pred dose more quickly, but after investigating the potential side effects of this, I decided not to take it ( in the short term anyway). I have had no mood swing issues with the steroids. I agree with Piglette. Why not try the steroids for a week?

Not sure if you are referring to me as have been on steroids for 3 months and found side effects much worse than the slow approach to methotrexate. Perhaps specialists do things differently here in Australia. Will continue to weigh up both aspects on my road to avoiding going blind. Thanks for help.

PMRpro profile image
PMRproAmbassador in reply to

I am merely working on the international concensus that methotrexate doesn't replace pred in PMR - and it most certainly doesn't in GCA. The alternative to pred for GCA is tocilizumab and it is already available in Australia. The best you can hope from mtx is that it might allow you to manage on a slightly lower dose of pred - and even that isn't guaranteed.

GerriMc profile image
GerriMc

I don’t know if my experience will help much but I couldn’t get any lower than 17.5 mgs of Pred and was in considerable discomfort. I started Methotrexate and within a couple of weeks felt a lot better and was then able to continue to taper down on the steroids. My blood markers dropped significantly when I took it. As others have said, I’m not sure if it will work alone but I certainly found it very helpful. The only side effect for me was a bit more hair loss and tiredness. That settled down very quickly. I take it at night so the tiredness is not an issue. Hope you get sorted whatever you decide.

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