When or if to taper

[Penguins3]

Hi All, sorry if this has been talked about before, it's never relevant until it happens to you. Last August during a phone appointment with rheumatology department was told to reduce pred by one mg every 4-6 weeks down to 5, I was on 9mgs at time. She said I couldn't be on pred indefinitely and told me to have shoulder ex-ray (which I did but it seems to have been lost in space). At the time GCA seemed to have 'gone' but lots of PMR pain , being a Practitioner she was consulting with the Rheumatologist and relaying to me over the phone what was said i.e. have ex-ray might be OA (I disagreed with her!). Anyway to get to the point I have been struggling, GCA is back and shoulders and hands not improving, was on 8mg but last week took the step of increasing by 5 to see if things might ease. How long will it be before I can hope for improvement and if it happens should I taper by 1mg or reduce by the 5 in one go? Sorry it's a bit long

[DorsetLady PMRGCAuk volunteer]

Hi,

Never apologise for posting and better plenty of info than not enough…

If you follow the flare protocol you should see a significant difference within 7-10 days… but you can stay on increase dose for 14days without impacting on drop back down, so use that timescale as your marker. If it works suggest you drop back to 9mg rather than 8mg. And then a much slower taper… maybe 0.5mg every month 4-6 weeks rather than 1mg.

If you don’t get significant improvement then you do need medication advice and maybe a higher dose as you have GCA.

Info on flare -

healthunlocked.com/pmrgcauk...

PS - did you get your dizzy spells sorted out?

[Penguins3 in reply to DorsetLady]

Thanks for info, I am finding it hard to cope, the gp who originally diagnosed GCA has left the surgery and when I request an appointment I can only see a Practitioner who was sympathetic and gave me painkillers but of course they were useless. I am not getting the dizzy spells anymore which is a plus 😀. I will persevere on this dose but today is not a good day. Thanks for your advice and support

[DorsetLady PMRGCAuk volunteer in reply to Penguins3]

Howlong have you been on increased dose? I know you stated last week…but how many days?

[Penguins3 in reply to DorsetLady]

Only 3 so early days

[DorsetLady PMRGCAuk volunteer in reply to Penguins3]

Yes… so give it more time…

[Penguins3 in reply to DorsetLady]

Will do

[PMRpro Ambassador]

"She said I couldn't be on pred indefinitely"

And why not pray??? If the GCA is still active - in the absence of a substitute such as tocilizumab/Actemra then you will need pred as long as you need it. And since you can't say WHEN you won't need it, by definition, that is indefinitely. I've been on pred for 16 years - still need it even with tocilizumab. Won't be stopping it any time soon I suspect.

When you have GCA and PMR symptoms appear as you taper the dose it isn't because PMR is a new problem, it is because PMR is part of your GCA and should be taken as a warning that the underlying cause of the GCA is still there and still active, requiring enough pred to manage the inflammation. If you have GCA and PMR symptoms appear, that is the forerunner of the inflammation that caused the GCA symptoms reappearing if you ignore it and reduce the pred dose any further. Which is what happened. So now, you need MORE pred, not less!

If you have GCA symptoms again you need to discuss it with the GP - since the rheumy probably actually caused this by making you reduce without actually seeing, or even speaking, to you. And you also need to impart the result of her tapering to your rheumy. In the hope she will listen and not repeat the mistake.

[Penguins3 in reply to PMRpro]

Thanks for reply, I knew people have been on pred for years so was a bit surprised. Maybe they want to push me onto the OR route to make their life easier. There isn’t much support out the so thank goodness for the advice on this site

[PMRpro Ambassador in reply to Penguins3]

Many doctors are so scared of pred that they forget to be scared of GCA and simply don't understand it and how it works.

It is also NOT acceptable that your practice doesn't make sure you see someone who knows that painkillers are of no use whatsoever for the pain of a GCA headache. That's like giving someone having a heart attack paracetamol without dealing with the underlying disease. You do give painkillers for a heart attack - but only while loading them in the ambo to take them to the cath lab!!!!