Hello, I am from Southern Ontario. : I was... - PMRGCAuk

PMRGCAuk

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Hello, I am from Southern Ontario.

PMROntario profile image
13 Replies

I was diagnosed with PMR at age 52, I am in Prednisone only taking 5mg daily right now. But the. weather is changing and feel i need to up it. Thinking about asking to change to Methotrexate..as anyone tried this?

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PMROntario
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123-go profile image
123-go

Hi. It would help us to help you if you give some more information 🙂.

One of our esteemed members (DorsetLady) provided the following link for new and existing members of the forum:

healthunlocked.com/pmrgcauk...

Please come back for replies when you've done this ☝️.

piglette profile image
piglette

Methotrexate is not a substitute for steroids. Some people take them as a sparing agent to help them in the reducing of the steroids. It works for some people and not for others and some people do have side effects from the Methotrexate.

PMRpro profile image
PMRproAmbassador

Why? Methotrexate doesn't replace pred for most people, it MAY enable some to get to a lower dose of pred but not always. For those it works for, it can be brilliant but many get unpleasant adverse effects. There are no guarantees.

PMROntario profile image
PMROntario in reply to PMRpro

I didn' think Prednisone was good to stay on long term. Has anyone had side effects from it

PMRpro profile image
PMRproAmbassador in reply to PMROntario

Most of us have had some side effects but most side effects can be mitigated or even avoided when you know how. I have been on pred for over 13 years and have very few effects I can't live with - and the pred keeps me able to move and live relatively normally. I'm atypical in having a fairly unusual form of PMR which is difficult to manage and goes on much longer than most.

You need the amount you need - and almost all flares are due to reducing the dose too fast or too soon. You star with a dose that is too high to get the inflammation under control ad then you taper the dose, a process called titration, to find the lowest effective dose, the lowest dose that gives the same level of symptom relief that the starting dose did. If you go below that dose then the inflammation builds up again and you are back where you started needing a lot more pred. The worst thing you can do is overshoot, have a flare, raise the dose, reduce, flare again - you have to be careful in tapering.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Do you have a return of symptoms-that’s the only real reason you need to increase your dose….not “just in case” - you don’t want to take more Pred than is necessary.

and as piglette says MTX is not a substitute for Pred.

PMROntario profile image
PMROntario in reply to DorsetLady

Yes, I totally agree. I just feel when I'm in a flare up 5 mg does nothing

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMROntario

Okay -can you give bit more info…..then we may be able to give better advice

PMROntario profile image
PMROntario in reply to DorsetLady

Yes absolutely, I was diagnosed with PMR at 52...4 years ago. I had neck, back, hip leg, upper arm pain. Seen specialist and started me on 10mg of Pred. I immediatley noticed a change after a couple days. I also deal with Hashimoto's and also had a stroke in 2020. I currently take 5 mg because i didn't want to be on a high dose of prednisone as i already have issues with weight gain from other meds I have to take for the other medical conditions. But I think i need to be on a higher dose right now as most of the symptoms have come back.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMROntario

I can understand you don’t want to be on more than necessary with other medication and conditions. But not being on enough is no good either -you aren’t getting enough benefit, but still some of side effects.

I know some North American Rheumies start at 10mg, but that’s below the international recommended starting dose (12.5-25mg is in guidelines) -and it seems it doesn’t do the trick for lots of patients. Some yes… Think you probably do need to increase - maybe try 7.5mg initially and see what happens -and you do need to discuss with your medical team.

Let us know how you get on please

PMROntario profile image
PMROntario in reply to DorsetLady

Thanks everyone..I will deff keep you posted! I have been home from work last 3 days aching. Was thinking maybe flu but I'm feeling the same symptoms I did before I started on Pred. I work at my Drs. office and will be talking to him when I go back hopefully tomorrow..and see if he will increase the dose. Fingers crossed! I'm sure he will.

PMRpro profile image
PMRproAmbassador in reply to PMROntario

Many of us manage pred-related weight gain with a low carb diet - which more often than not works.

PMRCanada profile image
PMRCanada

Welcome! I too am from Southern Ontario. Sounds as if 5mg is not enough to reduce you’re current level of inflammation.

I’m currently on Methotrexate as of January this year, but used only as a steroid sparer because I was “stuck” at 9mg of pred for over a year. It has worked thus far as I’ve been able to lower my daily pred dose slowly.

Hopefully you can get some relief as you are still working (something I can’t imagine navigating while on this PMR journey).

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