Morning all!: woke this morning achey and bit shake... - PMRGCAuk

PMRGCAuk

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Morning all!

Alliekat65 profile image
15 Replies

woke this morning achey and bit shake.. not great night sleep lolmy question is please

on Saturday I reduce from 9 pred down to 6...still no rheumatoid apps.

how will I know if 6 is enough...Will the headaches return and if so..how long b4 they come back ?

feel like opthalmology did good job but have passed the batten to rheumatoid clinic without anywhere to go in between

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Alliekat65 profile image
Alliekat65
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15 Replies
SnazzyD profile image
SnazzyD

If you did this in one go you may well find that your adrenal glands won’t be able to suddenly make up the shortfall of Pred with your own Cortisol. Even without trying to work, we would caution such a bit drop and instead suggest 0.5mg per month. If your cortisol production that is not sufficient at the moment you risk collapse or at least feeling weak, dizzy and ill.

Alliekat65 profile image
Alliekat65 in reply to SnazzyD

it's awful this thing. I never knew about it or how people cope with limited information..apart from on here

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Alliekat65

Many of us didn't know anything about until diagnosed... and then its a very quick learning curve..

PMRpro profile image
PMRproAmbassador

Why are you to drop from 9 to 6mg in one go? I did look at some of your past posts but haven't time to read them all in detail. I can't think of anywhere I would suggest that unless it was after a flare after overshooting the dose you need.

Alliekat65 profile image
Alliekat65 in reply to PMRpro

sorry no 45mg to 30mg

PMRpro profile image
PMRproAmbassador in reply to Alliekat65

Even that is a massive drop - why so much at once? I'd say not more than 5mg at a time.

SnazzyD profile image
SnazzyD in reply to Alliekat65

I found at this level, I felt even a 5mg drop that would make me feel achey, headachey and very tired. If you are going to go back to work in a stressful environment and poke the hornet’s nest of a flare or withdrawal I fear it will end in tears if you don’t slow it down.

If you have a flare after a whole 15mg drop you have no idea where your safe point might have been if it was under 45mg. It could have been 35mg or 37mg for example, but you would likely have to go back up to 45mg or more. Also, a recurrence of symptoms isn’t always instant and may take a few days or a week or two to flare up. If you have reduced again the meantime you could end up in a real pickle and end up on more Pred than if you had reduced carefully, not to mention horrible withdrawal pain. Sometimes it can be difficult to know at first what is withdrawal and what is a flare. One thing to consider is if you are putting your body through this, are you going to be a safe carer to those at work?

123-go profile image
123-go

Hello. I am shocked to read that you were taking 45mg prednisolone seven days ago and are on just 6mg today! Who prescribed that initial dose and is telling you how to reduce?

GCA needs specialist management and while a GP can start you on steroids you should be under the care of the hospital rheumatologist. It looks as though you are going to have to take matters into your own hands rather than wait in the hope that you get an appointment before much longer. Others will be along to advise but I strongly suggest that you ring the hospital and ask to speak to the Rheumatology secretary. Have your NHS number ready (it should be at the top of the page of any hospital letter you may have received). Explain what is going on and say you need an urgent appointment and are being left in limbo with a serious condition.

I have no wish to alarm you but in the absence of any intervention from professional sources you are going to have to advocate for yourself. Please keep us informed.

versusarthritis.org/about-a....

PMRpro profile image
PMRproAmbassador in reply to 123-go

She has corrected the dose - the drop is to be 45 to 30. Still too much in our view but hey-ho!

Alliekat65 profile image
Alliekat65 in reply to PMRpro

neuro opthalmic lady not GP Good news I've lost 2lb lol stress is a diet I don't want . lol

Alliekat65 profile image
Alliekat65 in reply to 123-go

No sorry I was talking pills Not mg I have been on 45mg and go down to 30mg sat and a month after 25mg then another month down to 20mg

yes even with my limited knowledge it feels alot ..and yes I think I will call

123-go profile image
123-go

Thank you and yes- ridiculous!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

At higher doses for GCA, Pred can be reduce in bigger steps - but 45mg to 30mg is too much... 33% definitely not good.

I'd go up to 40mg for a few days, then down to 35mg... and stay there for a 3-4 weeks and then only 5mg a time, until you reach 25mg, then by 2.5mg..

piglette profile image
piglette

Was it your GP who suggested that drop? All I can say is rather you than me.

Alliekat65 profile image
Alliekat65

No hospital...I will let ya know how I get on...hopefully no roaring headaches

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