Should I increase dose : Good morning all. I... - PMRGCAuk

PMRGCAuk

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Should I increase dose

Chriss66 profile image
9 Replies

Good morning all. I dropped from 9mg pre to 7 5 mg three weeks ago. Struggled for a few days went back up to 8 5 for three days. All well again so dropped to 7.5 again. This morning I woke at 4am in a lot of pain in shoulders neck lower back and collar bone. Not sure what to do so any advice would be appreciated

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Chriss66 profile image
Chriss66
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9 Replies
SnazzyD profile image
SnazzyD

Looks to me that your dose steps are way too large for this low a dose as in 16-17% instead of a max of 10%. If it was me I’d go back to 9mg and drop 0.5mg slowly over at least a month. By this I mean introducing the new dose slowly instead of one drop and stick. At this level I took 6-8 weeks per 0.5mg. The lower you go the more you are likely to feel any sluggishness in adrenal function that needs to kick in soon. You need to get off this yo-yoing so you can pinpoint the effective (for now) dose more accurately and try to avoid a big flare because of inflammation being allowed to build up while you make stabs in the dark. Sit tight for more help from the clever ones.

Chriss66 profile image
Chriss66 in reply toSnazzyD

Thank you it was the rhumatoligist that set the dosage.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toChriss66

That sounds about right..,but it’s your body. And the guidelines advise -1 mg reduction every 4-8 weeks once below 10mg (depending on patient!).

As we recommend 0.5mg reductions are better - less shock to system!

Agree with SnazzyD try 9mg initially - hopefully will be enough.

PMRpro profile image
PMRproAmbassador

Are you dropping "overnight" from your old to new dose? Now you are below 10mg each change in dose shouldn't be more than 1mg and even that is too much for many.

Your rheumatologist may have set the dose but all the recommended approaches say 1mg at a time below 10mg. I doubt your rheumy has ever had to reduce pred or even had PMR - and believes the textbooks. One size does not fit all

Chriss66 profile image
Chriss66 in reply toPMRpro

I was on 9mg for 6 weeks and then dropped to 7.5 for 6 weeks. This is my third week and in a lot of pain this morning. I will contact my GP and ask her for a prescription as I only have what rhumatoligist prescribed.

PMRpro profile image
PMRproAmbassador in reply toChriss66

That is about right for being maybe 1/2mg too low. At this stage slow is better - and by slow I mean the size of the dose change as well. You may be fine at 8mg.

Chriss66 profile image
Chriss66 in reply toPMRpro

Thank you for your help and advice. It's a strange illness and difficult to manage.

PMRpro profile image
PMRproAmbassador in reply toChriss66

Depends how you look at it - as long as you go about reducing with care and listen to your body then it need not be very difficult. Every job is easier if you break it down into bite-sized chunks. The most difficult bit can be persuading your doctor to slow down!

Yellowbluebell profile image
Yellowbluebell

since reaching 10mg I have only reduced 0.5mg every 6 weeks. Yes its slow but its working and I havent had any flares. You need to take a lot smaller tapers and stop rushing. YBB

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