PMR -Dose tapering

[Amerloque]

Had a meeting with my GP re my does tapering (currently on 8.5mg). He seemed to think I should carry on tapering until the original symptoms returned. I would have thought the idea would be to avoid flare ups? What advice have you recieved?

[SnazzyD]

Ideally you don’t hit that point. How fast do they want you to go? Can you say a bit more about your history to help others be as helpful as possible?

[Amerloque in reply to SnazzyD]

Yes I should have given a few more details. After two episodes of Acute Urinary Retention and a Holep operation to remove prostate tissue. About three weeks after the op I was beginning to feel better when everything went into reverse and I was getting progressively stiffer, not being able to turn over in bed, do my shoes up walk properly etc. The GP a locus suspected PMR which was confirmed by blood tests (CRP level 115) they put me on 15mg daily of Prednisolone which cleared up the stiffness quite quickly. Currently on 8.5mg but once I got down to 10mg every time I taper the dose I get some symptom or another. Back ache, headache etc nothing like the original symptoms but painful nonetheless. Usually they clear up after a week or so but sometimes I have to go back up to the previous dose and try again a couple of weeks later.

I have had very little guidance from the GP, mostly. Have looked online. Seeing the same GP more than once is a major achievement but my official GP is very vague about the whole thing.

[SnazzyD in reply to Amerloque]

Sorry if I’m being a bit dense but I can’t work out over what sort of timescale this has all taken place. It’ll help prevent repeating yourself in the future if you put this useful info in your Bio.

[Amerloque in reply to SnazzyD]

Sorry, Was diagnosed end of October

[SnazzyD in reply to Amerloque]

ok so you’re about 6 months in, relatively early days. Some GP’s think it’s all over in a year or two but that usually isn’t the case and can take longer. It has been explained already why you need to reduce slowly now. The other bit that is often glossed over is that once you are under about 8mg your adrenal glands need to start working again. This can often be slow so no matter how well your PMR is doing, your reductions may be dictated by that. Do read the section about adrenal glands in the NEW FAQ’s 2022 & 2023 to the right of this page. The symptoms you experience within a day or two of a dose drop are likely withdrawal, especially if they go after a few days to a week. This a different to a flare of PMR and is the body adjusting to the new dose. Once you get under 8mg you need to be aware of the low adrenal symptoms and often the trick is trying to work out which it is, withdrawal, adrenal or PMR flare. Going slow helps with this puzzle.

[Amerloque in reply to SnazzyD]

Thanks

[DorsetLady PMRGCAuk volunteer]

Hi,

That’s a bit vague from GP -but more info might help us to answer - how have you been reducing so far, what start dose and when.

The aim, after the initial high dose which mops up all the built up inflammation as well as controlling the daily shed of inflammation is to reduce making sure that after each reduction you feel as good as you did on the initial dose. You aren’t reducing - come hell or high water -to zero… and if you can manage with a sensible taper, and it ties in with your PMR going into remission then ideally you shouldn’t have a return of original symptoms. That’s not always the case though.

Recommendation from most official guidelines say once below 10mg, reduce 1mg every 1-2 months….

You might like to have a look at this -,

healthunlocked.com/pmrgcauk...

[Amerloque in reply to DorsetLady]

thanks

[PMRpro Ambassador]

By using the slowed tapers you get to the point at which it isn't holding the symptoms any more and then return immediately to the last dose that works - you shouldn't allow a flare to develop but cut it off at the pass.

It is the way you identify the dose you are aiming for, the lowest effective dose, the lowest dose that gives the same relief as the starting dose did. Ideally you shouldn't feel any worse at the end of any tapering step than you did at the start unless it is something like osteoarthritis which will often benefit from pred but they don't like patients using pred for OA.

If you don't do that you may stick at far higher a dose than you really need - some people get below 5mg before getting stuck, occasionally someone gets to zero without any hiccups.

[Amerloque in reply to PMRpro]

thanks