PMR returned after off Preds for 3 months - PMRGCAuk

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PMR returned after off Preds for 3 months

cassie1208 profile image
13 Replies

I weaned myself off Preds 3 months ago - diagnosed with PMR 6 years ago.

Feeling fatigue, aching when I get up, still finger joints, pain is symmetrical in shoulders. Basically PMR has returned and I’m feeling miserable with it. Also feeling cold hands.

Please, can you advise should I go back on Preds to try it out?

What dose do you recommend? This would be to see if this pain is PMR or something else. I’m too tired to go swimming this last 2 weeks and it’s come back suddenly.

Much appreciated

13 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

You may find that a relatively low dose is enough to catch things…..perhaps try 3mg for a couple of weeks, you’ll soon find out if that’s enough.

If you don’t get a good result after that time, you may need more, but hopefully not.

If you think it is enough, then stay there for a month before you think about tapering again.

.,good luck, and let us know please.

cassie1208 profile image
cassie1208 in reply to DorsetLady

Thank you for your straight forward advice and I will a start on 3mg and see how it goes.Is it a symptom of PMR to have stiff finger joints on waking?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to cassie1208

Some people do get issues with fingers with PMR - could be arthritis maybe? Are you intending to get bloods checked?

cassie1208 profile image
cassie1208 in reply to DorsetLady

Bloods is something I can’t grasp -Should I request bloods from my gp?

Or should my gp be offering bloods to me?

How often do I need bloods?

Thanks

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to cassie1208

Just thought it might be interesting to see if inflammation markers had risen -that’s assuming yours did first time around. Not that it necessarily 100% proof - just an idea in case of doubting doctors should you need more Pred.

PMR2011 profile image
PMR2011 in reply to cassie1208

Yes, let your GP know symptoms are back and you like to have some labs to see if your inflammatory markers are elevated or if you mig have arthritis or something else. GP should know what to order.

PMRpro profile image
PMRproAmbassador in reply to cassie1208

It was for me.

PMRpro profile image
PMRproAmbassador

That is a very typical story of someone whose PMR is not entirely in remission but the disease activity is very low so it takes time for the inflammation to build up enough for symptoms to show. It isn't for nothing I say very very often that 1mg or even 1/2mg can be enough to keep a relapse at bay. You got to 2mg and below without trouble - if it were me I'd try a few days at 3, possibly 5mg, and then try 1mg longer term and see if that is enough.

Bloods - did they show how you were while reducing the pred? The never showed anything for me, pred or no pred.

cassie1208 profile image
cassie1208 in reply to PMRpro

Much appreciated- I will try - do you it’s advisable to stay on 1 mg for life if that seems enough? Thanks

borednow profile image
borednow in reply to cassie1208

After 5 years and now on around 1 or 1.5mg per day, that's exactly what I plan to do. The weight has now almost gone and at 78 my main aim in life is to just enjoy myself. Can't be doing with challenges anymore!! Good luck.

cassie1208 profile image
cassie1208 in reply to borednow

Hey thank you - you have a down to earth positive attitude to enjoying your life -like that !!!

PMRpro profile image
PMRproAmbassador in reply to cassie1208

Prof Dasgupta told us he often keeps people at 2-3mg long term as it reduces the risk of relapses. I think that is a bit pessimistic, many people manage on 1mg and obviously the lower the better. One lady took 1mg every 3rd day or so - no relapses. Less didn't work though

cassie1208 profile image
cassie1208

Interesting research thanks

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