Super GP update

[Rosbud]

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

[DorsetLady PMRGCAuk 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 in reply to DorsetLady]

Thank you I will try napping x

[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 Ambassador]

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

healthunlocked.com/pmrgcauk......

[Hidden]

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 in reply to Hidden]

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

[Hidden in reply to Rosbud]

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

[SheffieldJane]

He sounds wonderful. 🌸

[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]

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]

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 Ambassador in reply to Tillymore]

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

[Rosbud in reply to PMRpro]

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 Ambassador in reply to Rosbud]

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 in reply to PMRpro]

Thank you x

[Tillymore in reply to PMRpro]

Thanks for the tip..will try that

[Daffodilia]

I have a great GP too

Have you tried taking a nap during the day?

[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 Ambassador in reply to CathyM64]

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 in reply to PMRpro]

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

[PMRpro Ambassador in reply to CathyM64]

Like everything else if one is honest I fear.

[Rosbud in reply to CathyM64]

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

[Hidden in reply to Rosbud]

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

[Rosbud in reply to Hidden]

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

[Hidden in reply to Rosbud]

😂🤣😂🦸‍♂️

[PMRpro Ambassador in reply to Rosbud]

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 in reply to PMRpro]

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

[PMRpro Ambassador in reply to Rosbud]

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 in reply to PMRpro]

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]

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.