Methotrexate

[vlrdngh]

I’m having issues sleeping severe pain in shoulders and wrists rummy says go on methotrexate I’m not sure. Any advice thanx

[PMRpro Ambassador]

He wanted to try you on azathioprine at one point - he is obviously of the persuasion that PMR always goes away in 2 years and anyone who isn't off pred in 2 years needs something else. But without a lot more info about what you have done up to now it is difficult to make any sensible comments.

What dose are you on? How long? When did these pains start? Has your rheumy done x-rays/other imaging to look at your wrists for an inflammatory arthritis? Is the shoulder pain in the shoulder joint or in the muscles?

[vlrdngh in reply to PMRpro]

Hi PMRpro I’ve had PMR for approx 2 years was on 20 mg pred to start pains in hips shoulders stiffness etc. The pred has helped till now. I’ve tapered to 4mg but the pain in my right wrist and both shoulders is agony. Saw rummy today he ultra scanned my wrists. Said lost of inflammation in right wrist Kind of scared me by saying if this gets worse you will lose the use of your right hand !! Sorry I can’t say if the pain in my shoulders is muscular or in my joints. It’s so sore and I can hear my bones click whenever I turn over I’ve had to wear a soft bra as I can no longer tolerate the pain my usual one gives when I wear it. I have to pull the soft one over my legs and hips like knickers I can’t put it on over my head. I just feel a total wreck

I’m 55 and have been active all my life. I feel dead inside. Thank you

[PMRpro Ambassador in reply to vlrdngh]

MY first thought is you are simply down to too low a dose of pred - when were you last pain-free? You are never tapering relentlessly to get to zero - you are looking for the lowest dose that gives the same result as the starting dose did. Half of PMR patients take up to 6 years to get off pred - 20% manage off pred in a year but remain at an increased risk of relapse, by 2 years a third of patients get off pred. PMR does NOT last 18 months to 2 years as many doctors believe and will try to tell you. It is a chronic disorder and some of us need pred for quite a while.

[vlrdngh in reply to PMRpro]

Thanks for your reply was pain free ish prob 7 to 10 mgs And did taper slowly. If I increase the dose to say 10 do you think the pain in shoulders and wrist will go ? Thank you

[PMRpro Ambassador in reply to vlrdngh]

It might - impossible to tell without trying. But the point is that however slowly you reduce, nothing will get you below the dose you need at any given time. Slow reduction might get you there without as much discomfort that could be mistaken for a flare but there is only so much you can fool the body!

[vlrdngh in reply to PMRpro]

Sorry I’m not really understanding how will I know when to taper if I go bk to ten. Sorry starting to loose control of how it all works I thought I was doing well to get to 4 mgs slowly but these thoughts now out the window thank you

[PMRpro Ambassador in reply to vlrdngh]

You would have been doing really well IF you hadn't had a return of symptoms - that is always the measure of whether it is successful or not. Pred doesn't cure anything - it is a management strategy to allow you a better quality of life in the meantime until the underlying autoimmune disorder burns out and goes into remission. So you are looking for the lowest dose that does that. You need smal steps down so you don't miss the right dose and you need enough time between steps down to be sure you are still taking enough. Rushing at it like a bull in a china shop just confuses the issue.

If you go back to 10 for a week or so and see if it reduces the symptoms/pain you have, then you work from there. IF it reduces the pain you stay there until the symptoms have settled well. Then you try reducing 1mg at a time, possibly even only 1/2mg at a time to see if you can get lower. But if you have a return of symptoms you don't force getting to a lower dose. You stay where you are a bit longer. If it doesn't then you might need a bit more - 1mg can make a massive difference.

[vlrdngh in reply to PMRpro]

Thank you so so much I’m going to try that first I will inform my rummy of my ( our decision thank you ) and take it from there you’ve been so very helpful. I felt like I was at the end of the line today thank you so much

[PMRpro Ambassador in reply to vlrdngh]

I'm just suggesting what you can try - and then discuss it, with the evidence you have gathered, with your doctor. They supply the prescriptions, you must have them on side or find one who will share decision-making with you.

[vlrdngh in reply to PMRpro]

Thank you for all your help

[Sally001]

Hi vlrdngh, my rheumy wants me to go on methotrexate as well and I have been struggling with the idea of it. She gave me a website on the subject that you may also find informative, I know it helped me to decide that I will not take the drug. The website is rheuminfo.com

I hope you are feeling better. Take care.

[vlrdngh in reply to Sally001]

Thank you I’ll take a look

[MrsNails in reply to Sally001]

Very Interesting.....

Thank You 🙏🏼

[Jackoh in reply to Sally001]

Thanks for this -have saved for my sister in law that has been diagnosed with R.A.

[Sally001 in reply to Jackoh]

You're welcome; I found it quite helpful.