Super GP update : Two weeks ago I wrote of my super... - PMRGCAuk

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Super GP update

Rosbud profile image
30 Replies

Two weeks ago I wrote of my super treatment from my GP , well as promised he has called me twice to review how I was on 30mg pred and after speaking to me yesterday has decided I need another week at the same dose and he will call me on Friday hopefully to try reducing , my question is , while I'm better , I find by about 5/6 o'clock I'm so tired all I want to do is sit , any advice would be greatly appreciated , virtual hugs to all x

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Rosbud profile image
Rosbud
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30 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi

Good news on GP!

Is this a new phenomenon?

Are you sure you aren’t doing too much because you feel better in yourself - it’s very easy to do.

Perhaps a catnap after lunch would see you through. - fatigue is quite natural.

Rosbud profile image
Rosbud in reply toDorsetLady

Thank you I will try napping x

SnazzyD profile image
SnazzyD

That is always my flop time and if there is anything wrong or I’ve over done it, that is the time I feel worst, with anything even before GCA. From the beginning at 60mg to about 1mg I have needed a nap and until about 5mg I needed a solid sleep every afternoon.

PMRpro profile image
PMRproAmbassador

It is very common - and it is all about pacing:

healthunlocked.com/pmrgcauk......

Hi Rosbud

What a Wonderful GP 🌟

Are you taking a Rest/Nap in the afternoon, even 30mins on the bed with a book or nice music can be very reviving.

Hope you’re not trying to do to much, you have to let the Pred mop up the inflammation.

Kind Regards

MrsN 🌸

Rosbud profile image
Rosbud in reply to

He is wonderful, I will definitely try the nap. X

in reply toRosbud

Even if you don’t sleep, your resting which gives your body chance to recharge! 🌸

SheffieldJane profile image
SheffieldJane

He sounds wonderful. 🌸

Rosbud profile image
Rosbud

I really can't thank all of the members of this site you are all so giving of your time and knowledge and I know I for one wouldn't have coped through the last 2/3 years without being able to read your wise words xx

Louisa1840 profile image
Louisa1840

Roesbud Dear (what a lovely name!)

We all struggle with the fatigue which is such a part of PMR. I remember after I was first diagnosed ( 3 years ago)and on 25 mgs, being exhausted around 6 pm and sleeping on the couch until I tottered off to bed around 9 pm.

As others have said, napping is vital to your management and so long as you are not working it's vital you schedule one, or even two, in. I ALWAYS have a nap around 2 pm, with a book to start off with and then a good twenty to thirty minutes and wake very refreshed.

Try to stay positive and accept PMR and its limitations, eat a healthy diet and get some gentle exercise (I do aqua 2 or 3 times a week plus a sauna which is said to be good for PMR)

All the very best and don't forget to smell the roses!!!

Tillymore profile image
Tillymore

I find that no matter the dose of prednisone it makes me dizzy and very fatigued, so much I sleep for 2 hours after taking it...oh the joys of it all !

PMRpro profile image
PMRproAmbassador in reply toTillymore

When do you take it? A few people found that switching the timing to night time gave them an excellent night's sleep!

Rosbud profile image
Rosbud in reply toPMRpro

I take it between 7-8 o'clock and was sleeping really well when on my 8.5mg dose for pmr but since taking the 30 mg haven't slept so well but will persevere as hope fully will reduce this week , GO thinks he's going to reduce me by 2.5 A week , so I'll see how it goes , thank you for all your advice X

PMRpro profile image
PMRproAmbassador in reply toRosbud

If he thought it was GCA rearing its head then he needs to be a bit more circumspect about reducing than that. 30mg is a very low dose for GCA anyway. All the best.

Rosbud profile image
Rosbud in reply toPMRpro

Thank you x

Tillymore profile image
Tillymore in reply toPMRpro

Thanks for the tip..will try that

Daffodilia profile image
Daffodilia

I have a great GP too

Have you tried taking a nap during the day?

CathyM64 profile image
CathyM64

Hi Rosebud I also have a good GP too. Was just wondering why your GP didn't refer you onto your local GCA pathway as recommended by the current guidelines , particularly if he suspects TA.

PMRpro profile image
PMRproAmbassador in reply toCathyM64

Mainly because in many places they don't exist. They only work if GPs have been trained to use them - they have to recognise the criteria - and small hospitals can't have the set-up so it may be some distance to one.

CathyM64 profile image
CathyM64 in reply toPMRpro

Gosh it really is a post code lottery then regarding assessment and diagnosis confirmation!

PMRpro profile image
PMRproAmbassador in reply toCathyM64

Like everything else if one is honest I fear.

Rosbud profile image
Rosbud in reply toCathyM64

He decided that if he could see A result with treating me himself it would be better for me but did tell me in no uncertain terms that if anything happened , increase in symptoms etc to go straight to A&E , so I agreed to be sensible ,I think I was incredibly lucky that I must have been in the very early stages of TA and his actions have worked xx

in reply toRosbud

Thank goodness. Whenever I see your post title I see super doc with a Cape flying through the sky. 😁

Rosbud profile image
Rosbud in reply to

I'll have that image in my mind every time I see him now xx

in reply toRosbud

😂🤣😂🦸‍♂️

PMRpro profile image
PMRproAmbassador in reply toRosbud

GCA is like PMR though - not something you take a dose of pred for and reduce it rapidly again. The underlying cause of GCA can be active for some months at least though it does tend to be for a shorter time than PMR.

Rosbud profile image
Rosbud in reply toPMRpro

Thank you for this , I will keep that in mind and I'm sure super doc will let me reduce very gradually xx

PMRpro profile image
PMRproAmbassador in reply toRosbud

It's the idea of reducing every week that is worst I think - you have no idea where you passed the right dose for now as it takes some days to realise.

Rosbud profile image
Rosbud in reply toPMRpro

I’m being really vigilant just in case , I’m hoping he’ll be fine with really slow reduction, plus side he’s approachable x

Jackoh profile image
Jackoh

Yes 5pm always seems the worst time for me, although I do rest in the afternoon ( sometimes fall asleep) About 6.30 it tends to get better.

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