Another tapering question : I have reduced from... - PMRGCAuk

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Another tapering question

Jontie profile image
9 Replies

I have reduced from 17mg to 10 over 7 months with relatively few issues. 4 days ago it was time for me to reduce to 9 so I did. Two days later symptoms started returning, particularly the pain in my left sacroiliac joints. I assumed this was a flare so I went back up to 10. I've been on 10 for 2 days now and the pain hasn't gone. So, should I continue with 10 and hope it goes soon, or should I increase a bit more? It seems that flares are harder to cure than they are to cause!

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Jontie profile image
Jontie
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9 Replies
Soraya_PMR profile image
Soraya_PMR

I recently flared at the drop to 10mg. I tried to catch it with 2 days at 12.5, but couldn’t. So did 2 days at 15mg which eased things, then one day 14, one day 13, then 12 which is where I’m staying for a while as it’s the last dose I felt ‘right’ at.

Just my experience, hope it helps.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

It may not be a flare, we do get other things alongside PMR. Try taking paracetamol for a couple of days and see if that helps, if it does it’s not PMR, however if it doesn’t it could be a flare.

Even if the paracetamol works, it might be wise to stay at 10mg for a few weeks before you think about reducing. It becomes more difficult as you get into single figures.

Klah profile image
Klah in reply to DorsetLady

Is it still accepted philosophy that staying at 10m for a year before starting the DSNS method is the best way to approach PMR?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Klah

I think some Rheumies think that but can’t say I know anyone on here that’s done that. But it certainly wouldn’t do any harm to stay at 10mg for a few months.

SheffieldJane profile image
SheffieldJane

Hi Jontie, poor you, you were doing so well. I would just add to the good advice you have already had that we should avoid drops of more than 10%. When you are ready to drop from 10 mgs again, try a pill cutter and drop by 0.5 using one of the tapering programmes pinned on here like dead slow nearly stop.

I have found that a 2 day booster of say 15 mgs can sometimes rescue a taper like yours, then back down to 10 mgs and rest for a bit.

Jontie profile image
Jontie

Thank you. I'll try paracetamol and if no better will increase to 15 for a few days. Hopefully that will knock it on the head then back to 10....

PMRpro profile image
PMRproAmbassador

You may need a fews days at a higher dose to get things under control again - especially if you were just on the borderline of enough pred.

The "10mg for a year" is just one approach. They found it reduced the incidence of flares from 3 in 5 to 1 in 5 and I think it is because they are simply avoiding going to a lower dose where a flare would happen. Using one of the very slow tapers and being very proactive and returning to the old dose as soon as you notice problems does the same - you don't get into the area where you will flare. But for a lot of people that may not happen until a considerably lower dose.

And yes - all too easy to cause a flare and far more complicated to sort one out!

Klah profile image
Klah

In hindsight (isn’t hindsight great!), I believe I would have benefited from one year on 10m....I was so sick. Different course for everyone I know.

PMRpro profile image
PMRproAmbassador in reply to Klah

20/20 vision!

I think it probably has a lot of positives - like you don't worry about reducing, there is far less risk of a flare and needing to sort that out and you can just get on with getting to know "your" PMR. And the doctor isn't pestering you to "get off pred" - and that alone is a positive!

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