Unsure and worried

[Liskeard]

Hi all

Sorry to repeat my previous query, but not feeling good today and feel I need some support.

Having got PMR in September 2018, been diagnosed in December and started on 20mg prednisolone on 1/1/19 (having tried any-inflammatories for a few weeks), initially most of the pain - about 80-90% went. Not all of it. This is when I wondered if I needed more prednisolone.

Then earlier this week I woke to a feeling of dread - I ached before I got out of bed! My shoulders and glutes are tight and painful to use and I’m worried this may be my new ‘norm’.

I did have an emotional weekend with a friend who is in a bad place, does anyone think this may have contributed? Also it’s cold and snowy here - I don’t do cold! Maybe I’ve overdone it?

How long do people think I should wait (roughly) to let things settle again? Was this a ‘flare’?

Sorry for so many questions!

Many thanks in anticipation

Iona

[DorsetLady PMRGCAuk volunteer]

Hi

Not everybody gets 100% relief- although you will read on here that some feel marvellous after the first dose. 80-90% is acceptable I think although a little extra may give you complete relief.

Yes your stressful weekend will have made things worse, PMR likes a bit of stress - really thrives on it.

Cold doesn’t help many illnesses either, your body just has to work harder all around. And have you overdone it? Pred only addresses the inflammation side of PMR not the illness itself - you do need to ease off the throttle and learn to pace your activities.

Might be an idea to up your dose to 25mg for a week or so and see if that helps - have you spoken to doctor? Some are not happy for patients to self medicate.

Have a read of this as well -

healthunlocked.com/pmrgcauk...

[markbenjamin57]

Greetings Iona

This is only my (amateur) guess: but from what you say, a conspiracy of Stress and the cold, damp weather have probably caused a spike / flare in your symptoms. Many of Us Lot here report struggling in the Winter weather (a common Rheumatic-type reaction - as I know well!), and Stress is well-known to put additional strain on a struggling AI system.

Probably best to try to roll-with it, rest, pace your energy and keep WARM. As you're quite new to PMR, the body's natural energy battery (Cortisol Production) is likely to be depleted - even if the Preds are doing their work fairly well. From what I've learned here, 20mgpd Pred is the recommended starting dose for PMR nowadays (assuming there are no signs of GCA - in which case a higher dose is normally recommended as a precaution).

Also, PMR is known for its Heterogeneity in disease / inflammatory course: i.e. symptoms can vary in intensity regardless. It's quite a learning curve, I know, and I'm sure a few others will be along soon with their opinions too.

'Uncle' MB

p.s. hope you received the book ok..

[Liskeard in reply to markbenjamin57]

Thanks

Am loving the book and having a giggle!

[markbenjamin57 in reply to Liskeard]

Good, thanks! Well, maybe my silly ramblings are a temporary distraction from the rigours of dealing PMR if nothing else? BTW, some of your Cornish snow is landing in WSM as I write this. BRRRR...!!!

[Liskeard in reply to markbenjamin57]

Glad you’ve got some - share and share alike!

[markbenjamin57 in reply to Liskeard]

Ha!

[Daisychain12 in reply to markbenjamin57]

Mark I am so happy to read your reply. I love your posts. xx

[markbenjamin57 in reply to Daisychain12]

Thanks Linda. Well, I try to balance my silly ramblings here with some more serious insights into the Psychological Journey that many of Us PMR / GCA Lot also have endure. If it helps either way: 'Job's a Good Un' as we say in south west England

[Hidden]

Hello Iona

Sorry to hear you’re not feeling so good, 15mg was the usual starting dose but it seems to be 20mg in more cases now.

80-90% is what some people get as you may have other issues on going that could also be affecting you. I improved quite quickly & then rose to a peak after 10days & l was a bit of a Whirling Dervish then!

If you’ve had a stressful weekend & as DL has explained PMR loves Stress in whatever form! I always think of my Pred Dose as 🥃 that has to work on my PMR & generally keep me ticking over but add in outside factors & the glass is empty so not enough Pred to keep my pain at bay!

What time do you take your Pred? I take mine long before l get up, are you on coated or plain, uncoated is generally white & is absorbed more quickly.

I & quite a few others do stretching in the morning while still in bed, any chance you can get your breakfast in bed?

My other question before you ask GP about upping the dose is have you been resting? Or have you tried to get back to Normal???

You really do need to rest, keep warm & relax to let Pred do its thing, maybe you could try a simple painkiller like Paracetamol if it suits you as you may have other aches & pains not related to PMR

It’s still early days & you do read about the miracle of Pred/PMR but some people are slow burners.

Remember Pred isn’t going to ‘Cure’ your PMR it’s going to control the symptoms but do contact your Doctor & see what he/she thinks.

DL has sent you a very well worth reading link & PMRPro will be along shortly with some more words of wisdom.

Take Good Care

Read My Post from a couple of days ago, it might help!

Best Wishes 🌺

MrsN

[Liskeard in reply to Hidden]

Thank you so much for your comprehensive and supportive reply

[Hidden]

healthunlocked.com/pmrgcauk...

[Liskeard in reply to Hidden]

Hi, for some reason I can’t open the links in the site

[PMRpro Ambassador]

"Maybe I've overdone it?"

What had you been up to???? You can't go back to normal activities without expecting some payback I fear.

I'd suspect it has all conspired against you - even I ache in the cold. It also took me a few months before all the hurty bits had faded into insignificance. But just in case - do keep a watch out for any signs of GCA because that is a typical event - PMR looked better at a given dose but then got worse for no apparent reason as it got worse on the way to GCA.

[Liskeard in reply to PMRpro]

Thanks for your reply

Entertaining and giving emotional support I think was too much.

Ok, I’m starting to learn. Putting myself first has never been a strong point. Ho hum. All change!

[markbenjamin57 in reply to Liskeard]

(..sorry to interrupt, but maybe have a peek at Chapter 7 in my book for some possible answers to the 'Supporter-of-Others'-type dilemma with PMR?)

[PMRpro Ambassador in reply to Liskeard]

Being entertained is bad enough - being hostess is a no-no when you are unwell. And emotional support is even worse...

[SheffieldJane]

I notice that even minor stress can have a dramatic effect on symptoms. This weather is not helping anything. Don’t reduce while you feel like this. If it goes on for days you could up your dose a bit. 20 mgs is a kind of average start dose. Some people need 25 mgs.

[Daisychain12]

Hello darling. I am betting on the emotional stress. I am not exaggerating when I tell you it has a disastrous effect on my pmr. Please, try to be more self focused. It is not selfish to put your own health as number one, it is being responsible. I have had to learn this the very very hard way. xxxxx