Update and questions on pain / pred balance and possible RA symptoms

[Grannyasbo]

Morning all. I have been away on holiday in a yurt with no signal. Bliss. But was worried I would struggle with PMR. But happily didn’t too much at all. In fact my 15mg pred kept me going and pretty much pain free in my hips and thighs on my pain scale. Some days up to low moderate (4/5) but most days down in the mild (2). I even managed to do some walking took it quite easy lots of rests no big hills and managed 6 miles one day. Yay! Couldn’t believe it. Hips / thighs fine. Shoulders gave me most of the pain but still manageable and could do most things.

So now am back home and I did deal with GP before I went that as I had been on 15mg pred for 5 weeks+ that I would drop to 12.5mg on my return. She wanted me to drop before I went away. I refused and she agreed. Phew.

So have now done 2 days at 12.5mg. Seems to be going ok so far 🤞. But….

I developed quite bad bilateral wrist pain before I went away that the pred doesn’t seem to touch. Wake up with it and it stays with me for most of the day but does ease a little. Told my GP but she didn’t seem to be that interested in it as her main concern was getting pred down, which I sort of understand given side effects. I just need to help her understand the process better. We are on a journey together and I have the map, only she doesn’t know it yet 🤣 .

My questions for today are:

1. I am not totally pain free yet but can now do lots of things I couldn’t before the pred. And the pain is quite low level. Is it ok to reduce pred under these circumstances? In other words what is the delicate balance of pain/ inflammation vs nasty pred side effects risk?

2. Should I be worried about the bilateral wrist pain that the pred isn’t dealing with? Could this be a sign of something else going on eg RA? Should I seek more diagnostics for this?

Thanks in advance and wishing you all a good day.

[PMRpro Ambassador]

"her main concern was getting pred down,"Well it SHOULDN'T be, her main concern should be getting the symptoms under control.

Most of the long term side effects are for high doses and 15mg and below is not a high dose. If you try to force a reduction you are likely to end up back at a higher dose - and taking more pred in the long run. I've been on pred for 12 years now - no identifiable adverse effects AND it helps keep my atrial fibrillation under control so while it is possible there are cardiovascular effects of the pred it is also doing positive c/v things. Many of the putative pred effects can be seen in untreated PMR - and most of them can be managed or avoided when you know how.

What you should be watching for as you reduce is that the level of PMR pain you achieved on 15mg never increases, it should be stable at least. They are so desperate to use a low dose and then reduce immediately they don't let the patient get stable to find out how pain-free thay can be. I have to say I'd like to see your shoulder pain given a chance to reduce a bit further - although the bursitis pain I'd had before took a few months to go away.

Where is the wrist pain? Are your hands tingly or numb in the morning? If so, which fingers?

[Grannyasbo in reply to PMRpro]

Thanks as always for your advice PMRpro. I was wondering if you would say symptoms first before reducing pred. But wanted to check. I am pleased to hear 15mg is low-ish dose. To be honest I am most scared of the type 2 diabetes risk (runs in my family big time). Last year I lost 3 stone as I got a bit of a scare (incorrect HbA1c result) and was so relieved of done it. It’s early days with 12.5mg so will see how it goes and will keep your advice firmly in my mind as I go along. I do remember reading on this site when I first joined a study on long term effects of pred. But can’t find it now. Do you remember/ have a link please? I may be able to persuade my gp to read it. Maybe….

I had bone scan yesterday so awaiting results 🤞and am taking calcium and vit d.

Re the pain in my wrists. It is located in wrists and thumb pad and pad under little finger on other edge of my hands. Much worse in mornings and feels hot and occasionally throbbing. Goes up into fingers sometimes. Reducing a bit during the day but never goes away. Any ideas welcome.

Thanks again.

[PMRpro Ambassador in reply to Grannyasbo]

practicalpainmanagement.com...

This one? The other article about it with a bit different slant has fled into the ether - new owners of the publication. But there is a link to the original work at the bottom of the article.

I was wondering about carpal tunnel syndrome for the hands. But it tends to be one side of the hand that is affected.

[Grannyasbo in reply to PMRpro]

Thanks very much this is the article I remembered reading and does indeed look like good news and reassuring to me as I am very mindful about pred side effects. I am talking to GP next Tuesday again so will try and get her to read it. This is now my 4th day on 12.5mg (reduced from 15) and pain is back in a small way in hips / upper thighs and my shoulders are a little worse. Am monitoring it closely and if it rises too much am going to put myself back up to 15 and keep fingers crossed that GP won’t react badly if I do that.

I think I need to get her to investigate my wrist / hand pain too. The pred isn’t touching that and I want to know what is going on in case I have dual diagnosis or similar. Oh hum. What a journey.

Your help is sooooo much appreciated. GA