Rapid reduction similar to Jancorb: I wrote a few... - PMRGCAuk

PMRGCAuk

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Rapid reduction similar to Jancorb

Gunflash profile image
7 Replies

I wrote a few weeks ago that my rheumatologist (first visit) had told me to reduce from 10mg down to 5mg in a month, dropping 2.5 every two weeks so he could look at my blood tests on a lower dose of Pred.

I was rather skeptical followed his advice. I have been on 5mg for 10 days now and other than some small pains and cramps in the lower parts of my calf muscles I feel fine.

I saw him again yesterday and he said my bloods were fine. My new instructions to keep on 5mg for another 5 weeks then go to 4 one day and 5 the next and continue to alternate 4-5-4-5-4-5 etc. for another 6 weeks when he will see me again with new blood tests.

I wondered how long my body needs to adapt to the current 5mg it’s only been 10 days on this dose, am I being too optimistic?

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Gunflash
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SnazzyD profile image
SnazzyD

Three adaptations need to happen -

1) The body’s expectation that a certain amount of Pred will be coming and it doesn’t ie withdrawal. That is usually within the first week.

2) The reduced anti-inflammatory effect. Any inflammation slipping through might take a couple of weeks to build up, or if your condition has a surge for whatever reason (illness, stress), then possibly sooner.

3) The need for your adrenal glands to produce extra to make up for the shortfall after being switched off for so long. If you feel ok, you’re probably ok, but always be on the lookout for a sudden feeling of all not being well, particularly if you do something out of your usual day physically or emotionally. It can come as increased fatigue right through to sweats, low b/p, abdo pain, nausea, shakes and emotional instability to name a few.

How long you need? Depends on your body; some people sail through this bit, some like me take months and months to get through the low adrenal phase.

Gunflash profile image
Gunflash in reply to SnazzyD

Thanks SnazzyD Appreciated.

PMRpro profile image
PMRproAmbassador

It's difficult to say - your bloods may be fine now, the proof of the pudding will be whether symptoms return. In some people any pred will stop the liver producing the proteins that make the markers rise. Or they may lag weeks behind the return of inflammation that isn't being mopped up by the pred.

Right at the start I was given a taper of 2 weeks each 15/10/5mg. I was fine on 5mg for 2 weeks, within 6 hours of missing the first 5mg dose I was as bad as at the start. It may be a very profitable experiment, or it may not. Only time will tell.

Gunflash profile image
Gunflash in reply to PMRpro

Thank you PMRpro👍

RoadTrip profile image
RoadTrip in reply to PMRpro

Interesting, I have been told that, CRP has no lag, and is produced by liver on inflammation.

PMRpro profile image
PMRproAmbassador in reply to RoadTrip

It SHOULDN'T have a lag in most things, it is usually produced quickly but its effect on ESR takes longer. HOWEVER - you can ask on the forum and you will find people whose markers only rose a few months after symptoms started. And 1 in 5 patients do not mount the acute response (the posh medical name for this effect) at all - or at least, their blood markers don't rise so far they are "out of normal range". The level of the markers also does not necessarily reflect the severity of their symptoms - either way. And for some people, even a lowish dose of pred interferes with the production of CRP - no-one knows how or why.

Normal range is a range of numbers that covers 95% of a large population of apparently healthy people. The usual number is IRO 10,000 or so. ESR for example can be from 1 to 20 (or 30 in some labs) - and 2.5% of the population are either lower (difficult) or higher. YOUR own personal normal may be anywhere in that range - so if it is in low single figures like mine (4) that means that a reading of 18 is considerably raised but not noticed because it is under 20. Mine bumbled along at 16-18 for weeks while I was in hospital and really struggling with PMR symptoms but no-one said boo. The only time my CRP was raised was one morning when I had a severe episode of atrial fibrillation. The following week it was firmly in normal territory.

RoadTrip profile image
RoadTrip in reply to PMRpro

Many thanks for the info. Great explanation as always👍👍

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