Dizzy and shaky: In Feb. I was taking 4 mgs of pred... - PMRGCAuk

PMRGCAuk

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Dizzy and shaky

ancientprune profile image
6 Replies

In Feb. I was taking 4 mgs of pred.,down from 8mgs when I had a horrible flare and had to to go back to 8mgs.this month I'm tapering to 7.5 and will continue down to 5mgs then see my rheumy.Iwas taking my dose at 7 am at first but backed it up in stages to 2 am but wanted to stop setting alarm to get up so now take it at bedtime around 11 pm.Iwake up dizzy and shaky which lasts most of the day.Should I change the dose up or down or change the time I'm dosing.I'm using a walker so I don't fall on my face.Any advice will be greatly appreciated. Thank you.

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ancientprune profile image
ancientprune
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6 Replies
SheffieldJane profile image
SheffieldJane

I wonder if gastric coated Prednisolone would suit you? I take mine at 10-11pm and feel good in the morning. It seems to take about 6 hours to get into my system. I do wake with the birds but can usually get back off again.

This could also be your body crying out for more cortisol. Bring this up with your doctors.

PMRpro profile image
PMRproAmbassador

Did you have the problem when you took pred at 2am?

The trouble with taking plain pred before midnight is that it may be enough to stop your own adrenal function returning and you need a dollop of corticosteroid in the morning to get you going for the day. That doesn't matter as much at higher doses but you are getting into the realms of returning adrenal function now,

You are in the US so SheffieldJane's suggestion of enteric coated pred isn't an option - UK only. However - some people get gastric resistant capsules to put their pred into and it delays the absorption of the pred by several hours - good mornings without the downsides of taking it before bed.

SnazzyD profile image
SnazzyD

Sounds to me that when you get your peak Pred level it is the time of night you need to be low in cortisol that triggers the surge that gets you out of bed in the morning without you collapsing in a heap. You are probably not getting this surge. When you are on higher doses of Pred this doesn’t matter, but when you are on these low doses, there isn’t enough for the day, let alone if you don’t get the production of your own cortisol in the night.

ancientprune profile image
ancientprune in reply to SnazzyD

My rhumy doctor has never had me take a blood test but my herbalist has given me a supplement called adrenal cortex 50 mg twice a day. He started me on that a year ago when 'I had blood work and he said my adrenals were weak.I'm seeing my GP tomorrow and will discuss this with her as rhumy isn't too open to me asking questions.Is bed time dosing something I should avoid? Sorry to be so whiney but I've had this for 2 yrs. and no one gave me any information about PMR until I found this forum a month ago.When I told rhumy about it he dismissed me with Änybody can say what they want without knowing what they're talking about""Maybe it's time for a change.He doesn't have the disease to know how it feels.

SnazzyD profile image
SnazzyD in reply to ancientprune

Do you know what they tested to say your adrenals were weak? If the herbalist checked your natural cortisol levels a year ago and you were on a higher dose, they will have been switched off because the Pred gives you more of the artificial cortisone than you need. When you are on doses above 10mg it doesn’t really matter when you take it because your adrenal glands don’t need to function. But, when you start dropping below 7mg to need to think about taking it in the morning. I was a late in the day doser. I didn’t see an endocrinologist until I was on 4mg and he said to get onto morning doses straight away to give my adrenals the best chance to get the message to work by being triggered by the low level after midnight. It was my GP who referred me to the endocrinologist after asking for a Synacthen test to check the adrenal function. The Rheumy never mentioned it.

PMRpro profile image
PMRproAmbassador in reply to ancientprune

What exactly IS the supplement? Call me sceptical, but all I know of such claims suggests to me the greatest benefit is to someone else's bank balance ...

webmd.com/vitamins/ai/ingre...

healthline.com/health/why-y...

It isn't something I would put into my body. And one reviewer says they suffered dizziness and breathlessness.

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