appointment

[Shaza123]

yesterday I saw my new rheumatologist and her advice was for me to start reducing my steroids by 1 mg per month until I get down to 5 mg ( I am currently on 11 mg a day and have been reducing by half a mg each month) then 1 mg every 2 months. I have been told that they will increase my methotrexate to combat increased pain should I need it. I got down to 10 mg earlier this year but had to go back up to 12 mg as I couldn’t lift my arms up very high so I’m nervous as I go to 10 mg today. I would like other’s opinion on this .thank you

[PMRpro Ambassador]

"I have been told that they will increase my methotrexate to combat increased pain should I need it"

Did you ask for a guarantee in writing? Never heard of MTX being used as a painkiller in PMR!

Did they put you on MTX because of the problems at 10mg? Or were you already on MTX when it happened? Personally, I would want to get past 10mg the slow and steady way first and see if the MTX works for you - it doesn't for everyone whatever some rheumies will try to tell you.

[Shaza123 in reply to PMRpro]

Sorry I didn’t really make my post clear, I have methotrexate for my RA. I’m presuming the rheumatologist thinks the methotrexate will help with pain when reducing my steroids she said they would in crease the dose to combat this so I just presumed she knew what she was doing😉

I take the steroids for my PMR so not sure iether

[DorsetLady PMRGCAuk volunteer in reply to Shaza123]

so I just presumed she knew what she was doing😉

Excuse me while I roll my eyes…😳

[Shaza123 in reply to DorsetLady]

I know but what can I do I assume they know better than me and they hate it when you challenge them 😟

[DorsetLady PMRGCAuk volunteer in reply to Shaza123]

Very difficult I appreciate- so guess you have to try their way, but you also have to tell them if it isn’t working whether they like it or not….

[Shaza123 in reply to DorsetLady]

👍

[Shaza123 in reply to DorsetLady]

🤣

[tangocharlie in reply to Shaza123]

Ah, so she is assuming that the MTX will act as a steroid sparer so you can function on a lower dose of steroids. It's a possibility, for some, but not guaranteed, and also hard to tell because steroids work pretty immediately whereas MTX takes time to kick in. The main thing here is you need help tapering down the steroids, the schedule she has given you may or may not work and you need to know what to do if you overshoot the dose, ie reduce too much or too soon

[PMRpro Ambassador in reply to Shaza123]

Somehow I doubt that the MTX will help with the pain of PMR. In PMR it doesn't work on the disease process, it potentiates the effect of pred. If you take too much pred away it may not be enough even with MTX.

And as DL says - don't be backward in coming forward if it doesn't work and the PMR part worsens again.

[tangocharlie]

My opinion - get a new rheumatologist, one who has experience of treating patients with PMR who don't fit what they once read in the textbooks. Every case is different and needs an individual approach, flares are commmon and it's not a case of a straight line reducing dose. It says that in the actual guidelines for rheumatologists. Some rheumies reckon MTX works for PMR but it does for some and doesn't for others and for some like me there were horrendous side-effects; I'd take the steroids any day. No proper trials have yet been done on the efficacy of MTX for PMR so it is very much an experiment, yet they negect to tell people that. Ooh my blood is boiling, time for a cup of tea ....

[Shaza123 in reply to tangocharlie]

I know what you mean that’s why I thought I’d do the post I get so confused I feel sometimes they don’t really fully understand

[tangocharlie in reply to Shaza123]

They don't fully understand, not even the more enlightened ones, as so little is known about how to treat PMR and every patient is different, yet they assume all our bodies work the same. Read up all the info on here about how to reduce the steroid dose eg the Dead SLow Nearly Stop method. And ask questions ono here, there's a wealth of experience that even the professionals themselves turn to

[DorsetLady PMRGCAuk volunteer]

I would stick to the 0.5mg a time -and agree with others MTX is good for RA (guess that’s why you’re on it) but doesn’t always do a lot for PMR ..

[Shaza123 in reply to DorsetLady]

I’ve decided to do two weeks at 10 and a half mg then two weeks at 10 il still be going down 1 mg a month as she’s suggested but it won’t be such a big jump. I will have to suck it and see

[SheffieldJane]

I wouldn’t, the inability to raise my arms high is my original red flag symptom. I would not be reducing, I might even be increasing and resting. Some of these doctors seem to blithely make it up.