Flare: Flare Hi having gone down to 5 fairly easily... - PMRGCAuk

PMRGCAuk

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Flare

Carathedog profile image
6 Replies

Flare

Hi having gone down to 5 fairly easily, attempt at 4 resulted in a flare, I upped to 7.5 for ten days, no change, so now on 10, approximately twelve days, no change.

Am I being impatient, should I keep on 10 for a bit longer, or up my dose.

Many thanks

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Carathedog profile image
Carathedog
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6 Replies
PMRpro profile image
PMRproAmbassador

Not without talking to your doctor. If you flared at going from 5 to 4 then the time you have been at 7.5 and 10mg should be plenty to sort a PMR flare so it suggests it is something else going on.

How quickly had you been reducing the dose beforehand? Are the symptoms you have now the same as you had originally when you were disgnosed with PMR? Is it all muscular or are your joints causing problems too?

Are you still just under your GP who diagnosed you with PMR and then started you on 50mg which is a really very excessive dose for PMR and suggests he maybe doesn;t know what he is doing.

Carathedog profile image
Carathedog in reply to PMRpro

Had been reducing fairly quickly, no joint problems, same symptoms, very tired, and yes same GP

PMRpro profile image
PMRproAmbassador in reply to Carathedog

Mmm - but how long between step downs and how big were the steps. It may FEEL it is OK, but when you go too fast, you miss what you are looking for, the lowest effective dose, and by the time things go pear-shaped and you hurt, you don't really know where you crossed over the line. As a result of the very high dose at the start there won't have been any residual inflammation and it will have given you a low baseline and it will have taken a long time for the inflammation to build up again. It may have started at 10mg or even higher

Carathedog profile image
Carathedog

Ah I see, November 2021. 50 mg for two weeks, then 25 for two weeks,

December 2021. 15 for two weeks, then 10 for two weeks

January 2022 5mg. from 7th to 7th March, felt mostly good, a few tired days, also enjoyed a week in Tenerife.

March 8th, down to 4mg , all ok for just over two weeks, then pains started again, so 7.5 for roughly two weeks, and have now been on 10 since 12th April. Some days are ok, others not

Will get a doctors appointment this week

Thanks again

PMRpro profile image
PMRproAmbassador in reply to Carathedog

So you dropped from 10mg to 5mg all in one and then stayed there for 2 months? If so, I would suspect that is where it went wrong.

From 10mg. steps should be 1mg at the most - not more than 10% of the current dose is better at any level. 10 to 5 was 50% and you missed a lot of potential adjustment and time by doing it. If what you really needed was 9mg you then had 2 months of leftover inflammation building up which finally hit in March at 4mg. So in that case, if REALLY you overshot at 9mg you might need more than 10mg to clear it out.

What you were doing would have been fine to get to zero from the 50mg starting dose IF that high dose had cured anything. But it doesn't, the "hit it hard" concept only works for a while, PMR is a chronic disorder and eventually if you aren't on enough pred, the inflammation builds up again. Starting with 50mg also confuses the picture - PMR is characterised by a good response to a moderate dose of pred, up to 20-25 mg max, and when doctors use such high doses, all sorts of things will respond to 50mg. But it never lasts and at some point the symptoms return and are harder to get under control again.

Carathedog profile image
Carathedog

Thanks for explaining this , doctors appointment tomorrow

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