Restless nights on 5mg

[Swizzly]

Hello everyone. I have been taking 5mg prednisolone for 2 weeks. Unfortunately I can't sleep at night, I feel restless, I sweat and I can hear my pulse in my ear, which scares me. Blood pressure ok. Little Headache. I only have a few PMR pains. Is it the adrenal glands? Should I increase Pred and see if it gets better? I don't have an appointment with the GP until Tuesday. Thanks for the support.

[DorsetLady PMRGCAuk volunteer]

If it is adrenals, then increasing the Pred is not really best option… it only means you’ll have to drop back and probably have go through the same things again.. if it’s bearable try and stick to current dose. If it become too bad then maybe an extra mg or half a mg.

But if you think it’s a combination of PMR and adrenals you may need to address it with a small increase… sometimes it’s a bit difficult to know.

[Swizzly in reply to DorsetLady]

Many thanks DorsetLady

So I'm trying to persevere with 5mg. I want my adrenal glands to work again. I hope this feeling of stress and restlessness is nothing else. I had no problems at all with 7.5. As many say: the lower the harder.

Good luck to all🍀

[PMRpro Ambassador in reply to Swizzly]

Have you gone straight from 7.5mg to 5mg? If so - no wonder you are wobbling!! Below 10mg it should be 1mg at a time maximum - no drop should really be more than 10% of the current dose - that was 33% if that was what you did!!!

[DorsetLady PMRGCAuk volunteer in reply to Swizzly]

Your doctor needs a reality check- you need to go much slower at lower doses -for both PMR and adrenals - and wanting you to be at zero in a few months time is bonkers -and dangerous in relation to adrenal function.

see this -

healthunlocked.com/pmrgcauk...

[Swizzly in reply to DorsetLady]

I follow now your slow taper plan, DorsetLady 🍀

[DorsetLady PMRGCAuk volunteer in reply to Swizzly]

Good -that helps, but you can still go too low (not your choice) even on slow taper -it just makes it easier to catch and remedy..

[Swizzly in reply to DorsetLady]

I now know how bad it feels like 🥴

[PMRpro Ambassador]

This is a common effect of low adrenal function - they haven't caught up with the reduction on pred dose. The trouble is that if you go back to the last dose, you are only postponing the problem. What dose were you taking before the last reduction?

[Swizzly in reply to PMRpro]

Since 10.2. with the slow taper plan from 7.5 to 6.25. then my GP said I had to go to 5 immediately. Since 1.3. I have been on 5mg. During the day it is much better.

[PMRpro Ambassador in reply to Swizzly]

What is it about GPs and being in a hurry!! If you go slowly,, you feel it less. And as you reduce the dose of pred, you need to go SLOWER not faster. You are getting closer to the dose that will be the lowest effective dose for managing your PMR/GCA - but at this stage the return of adrenal function is also a factor. That doesn't happen overnight, like a light switch flicking on or off, it is a slow process and takes a lot longer than most doctors think - even endocrinologists were surprised in a study in Leeds UK about how long PMR patients needed.

[Swizzly in reply to PMRpro]

I'm so glad for your advice PMRpro🌷 My GP wants me at 0 this summer 🤔

What do you think, should I go back to 6.25 or 5.6 (the smallest dose I can cut is 0.6) and then go back to the slow taper plan? Like I was actually planning to do? My GP is making me unsure.

PS i have 20 and 5mg tablets breakable in 4 pices each.

[PMRpro Ambassador in reply to Swizzly]

"My GP wants me at 0 this summer "

Ha! He does does he!!! Oh dear - he may be very disappointed because that isn't how PMR works. Does he tell his RA patients they must get off whatever drug they are on? PMR doesn't always go away either ...

I think you need to stick to your plan. 20mg tablets are useless in PMR - no chance of 1mg tablets? Or a more informed GP?

[tangocharlie in reply to PMRpro]

I'm trying to think of ONE paper that patients could print off and give to their GPs about tapering that they would take seriously. The old Rheumatology guidelines are too difficult to read and vague to follow but will hopefully be updated soon. Can you think of anything? Kate's next book of course when it comes out, but in the meantime?

[PMRpro Ambassador in reply to tangocharlie]

Christian Dejaco's t2t paper is probably the nearest. And Prof Quick's paper is helpful.

[Swizzly in reply to PMRpro]

What I forgot to mention: GP gave me beta blockers and antidepressants

[PMRpro Ambassador in reply to Swizzly]

They may help the symptoms - but I would be annoyed that they reached for an antidepressant without thinking. Are they helping?

[Swizzly in reply to PMRpro]

I took them for 3 days because I had such bad nights.

"Did they help" Not a bit!

[PMRpro Ambassador in reply to Swizzly]

Antidepressants take weeks to take effect - but the bad dreams in this case have a different underlying cause, low adrenal function. Doubt antidepressants would have any effect however long you took them!!

[Swizzly in reply to PMRpro]

I am so grateful for your great knowledge. Short and to the point 👍🏻

[tangocharlie in reply to PMRpro]

If I had to say ONE bit of research that I think would most help us patients by educating and enlightening doctors it would be to continue the Quick and Kirwen research into steroid dosing but as it stands it is just one paper lost amongst thousands, whistling against the wind

[Swizzly in reply to PMRpro]

The 20mg tablet can be break into four = 4x 5mg

So also the 5mg = 4x 1.25 mg

I cut the 1.25mg with the cutter = 2x 0.6mg (GP was surprised about this idea)

I will now increase the dose to 6.26mg and then go down slowly again. Hope the nights goes better so.

On Thuesday new joung GP hope she knows better.

[Charlie1boy in reply to Swizzly]

Can’t you get 1mg tablets? As soon as I got down to 10mg, I was prescribed 1mg tablets only. They had a line down the middle, and were very easy to cut in half. If I were in your shoes, I would definitely ask the GP to prescribe them.

[Swizzly in reply to Charlie1boy]

I will ask for 1mg. Would be easier 😊

[Charlie1boy in reply to Swizzly]

👍

[tangocharlie in reply to PMRpro]

As you Moderators and us regulars on here well know from the amount of similar questions we get on here, most GPs have a scant and cursory knowledge of how PMR works and at the same time it's been drilled into them about how dangerous steroids are. GP training HAS to be the priority for the charity to work on

[Longtimer in reply to tangocharlie]

Couldn't agree more!....as for a paper with facts and figures of steroids etc.....would they even bother to read it!.....I know of one very arrogant Rheumy whp would just push it to one side!....I'm sure there are plenty more like him!

[tangocharlie in reply to Longtimer]

That's why we need something credible and definitive

[HeronNS]

Don't know if this helps, although misery loves company: When I was at a certain level, in my case it was closer to 7 than 5, I had a feeling of panic with no external reason for such a sensation. I remember this lasting for a bit, a couple of weeks perhaps, and then I guess it just went away without my noticing. Have always attributed it to the level of pred at the time and that particular symptom has never recurred (nor had I ever had it before). In those days I was following the Dead Slow Nearly Stop tapering plan and was reducing in 1/2 mg steps, and not on any other medications.