How long to stay on a double dose to control a PM... - PMRGCAuk

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How long to stay on a double dose to control a PMR flare?

ignatz
ignatz

How long to stay on a double dose to control a flare?

Flared around 10 days ago on arriving at 4.5mg on a DSNS taper - 6+1 days; 5+1 days; etc.

Doubled dose (to 10mg) for 2 days and felt better. Back to 5mg- felt terrible. 10mg better again; 8 or 7mg terrible. Will try 10mg tomorrow and then.......? Either 10,10,10,10,10,10,9, 10,10, etc? or 10,9,8,7,6,5 and then try 5,5,5,5,5,5,5,4, etc?

15 Replies
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Yellowbluebell
YellowbluebellAmbassador

You need to stop tapering and let your body settle down. Constantly yoyoing isnt good practice. Personally i would remain at 10mg for a couple of weeks if not a month and then taper by 0.50mg per month. YBB

Going up and down is not good in a long run. When you tapered to 4.5mg you have probably gone below your ideal maintenance dose. Assuming you did not have any problem at 5mg, I would go up to 9-10mg for a WEEK and then try 5 or 6 mg. If you stay at higher dose shorter then week to ten days, it is not necessary to taper and you can go directly back to lower dose ( or just above the last dose that you felt good at).

DorsetLady
DorsetLadyPMRGCAuk volunteer

Agree with others - 2 days at the higher dose was not enough - you need at least a week. Personally I would then drop to, say 7mg or 7,5mg and stay there for at least 2 weeks before you start your 0,5mg tapering again.

Not directly back to 5mg, that was obviously just on the cusp of being enough, and you may well fall into the same situation if you go back down too quickly in one jump. Sometimes it can be done, but not always.

Looking at your profile, you seem to have been in this situation on a few occasions - are you implying that MTX is not helping you reduce steroids as expected? - and why the steroid injection in December 2019?

As diagnosed in 2017 maybe you (or your doctor) are pushing the reductions too quickly - PMR can last a lot longer than some doctor’s like to think!

PMRpro
PMRproAmbassador

You can stay at the higher dose for up to a week to 10 days and drop back to the previous dose quickly. But sometimes it isn't the taper that did it - it can also be an increase in disease activity.

But I'd also stop messing about if 7 or 8mg are still bad - because that sounds a lot more like an increase in disease activity.

I am still at 15mg, recovering from my spinal fusion Oct. 1st, tried to reduce, horrible!! Use to be on 7 before surgery. Doing better, sometimes your body just can’t cope after a major thing. After 8 years, learning, quality of life is very important 😎

Bad luck about the flare. For what it’s worth, I had my one and only flare so far with the drop from 4 to 3mgm

My GP told me to go straight up to 10mgs for 3 days, then 9, 8, 7, 6, 5, and when I reached 4mgms on Day 9 I was to stay there for at least a month before going back to see her again.

When I did, just over a month later, I still had some fatigue so she left me on 4mgm for another 2 months because I was fairly busy at that point - plus Christmas, which she described as always bringing an element of stress - was on the horizon. Only after that was I to taper down to 3 (where I still am).

That worked for me, I hope that helps.

PMRpro
PMRproAmbassador in reply to Mai45

What a sensible lady!!! Medal awarded!!!!

Mai45
Mai45 in reply to PMRpro

She certainly is - and when I read some of GP and Rheumatology stories on here I definitely appreciate my GP. Her control is tight in that I get a script for only slightly more than I need, at the dose agreed, till the next appointment. No stockpiles or regular uncontrolled repeats to vary my dosage as I decide.

But she listens, discusses rather than dictates, and has got me down to 3mgm after 3 years with just that one flare.

I do know how lucky I am, and just wish I could share her with more of you! (apart from her obsession with making me stand on the scales)

Goodness gracious! What a helpful bunch! Many thanks to all who have taken the trouble to write back.

I have tried 9mg last night and aching and exhausted again today.

I shall now try 10mg for 1 week; then 7.5mg for 1 week; then back on the taper 6days old+1day new; 5+1; etc. Fingers crossed (no pain......legs crossed- phew, that aches :)

Yippeee. 10mg- I can plan to go out dancing this weekend after all!!!!

PMRpro
PMRproAmbassador in reply to ignatz

If that is what you need to live well - think about it. It will improve - but maybe not yet. In the meantime you don't want become a recluse.

ignatz
ignatz in reply to PMRpro

We now have Corvid19 in London so all are becoming reclusive. A dear friend proposes a salsa bar for tonight! Ever so tempted.....

PMRpro
PMRproAmbassador in reply to ignatz

One is left to think PMR may be preferable to Covid ...

ignatz
ignatz in reply to PMRpro

...yet to try Covid! Must get out more.

PMRpro
PMRproAmbassador in reply to ignatz

Other than Covid as a common cold I'll pass - definitely on Covid19 ...

Update:

Saw head Rheumatologist 9 days ago. She prescribes 20mg pred for a week then reduce to 10mg for 5 days and then 10/5mg for a week then down to 5mg but I only get this in an email after 2 days ago.

Ooops... I have done 1 day at 20mg, then 8 days at 10mg- with 15mg today as my shoulders are aching yet again.

Saw rheumatology nurse 12 days ago and am now injecting my 22.5mg of Methotrexate once a week.

Have taken to telling people that I am 'on sick leave' as I seem to spend so much time knackered and aching to a greater or lesser degree.

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