Flair of PMR

[Rene20]

First diagnosed August 2010.Ups and downs.

Last saw rheumatologist July 2021.now on 2.5mg prednisolone after Methatrxate not helpful.

Due to adrenaline defecienty to remain on 2.5mg bobbing along well.

October 2022 after a holiday followed by a cold.

Big flair.had face to face with gp never seen him before. Had blood test that day increased pred to 10mg.

3 days later no improvement spoke to another gp increased to 15mg. Inflammatory markers raised 95!

After 2 days on 15mg all stiffness gone. Remained on this dose 4 weeks.

Reduced to 12.5 for 4 weeks.

Due to reduce 19/12/22 to 10mg fingers crossed.

Could I please have advice from all your experience /expertise on tapering from 10mg.?

Thanks Anne.

[DorsetLady PMRGCAuk volunteer]

Actually that’s a bit overkill for treating a flare - the link below shows usual procedure, which means that once your illness is back under control you can usually reduce quite quickly to just above the dose where the issues started.

healthunlocked.com/pmrgcauk...

However because you’ve spent a total of 8 weeks at higher dose you will need to go more slowly.

Once you get to 10mg, you may be able to step down in 2 stages to 5mg - so to 7.5mg stay there for a week or two and then to 5mg for bit longer - and then slow it down to 0.5mg a time.

But it’s all a bit trial and error ……but as you are only just over 2 years from diagnosis just go carefully once you get back to 5mg. Slow and steady will help your adrenals as well.

In your last post we did query if it was only PMR, as inflammation markers can be caused by many things…was that ever investigated, or just assumed to be PMR by GP?

[Rene20 in reply to DorsetLady]

Thx for your advice. I have actually had PMR for 12 yrs. Yes defo a Flair been there before got the tea shirt. GP lead by me!

So will take your advice re tapering .thank you.

[Nightingales in reply to DorsetLady]

I saw this Dorset lady and re read all the flair/adrenal guidance and wondering if I have been doing the wrong thing all along. I have had 4 major “blips” flares whatever it really is, with symptoms as bad as when it first started and very high inflammatory markers, where previously they had been normal for a while. My rheumatologist has always put me up to at least 20 one time 30 and I have started the long taper again. It usually takes about a month to feel better. It’s been over seven years now. If it happens again and I have got down to say 8 mg should I go to 13 and follow what’s in the link?

[DorsetLady PMRGCAuk volunteer in reply to Nightingales]

Well hopefully you won’t flare again -but are you doing that because Rheumy is pushing you to reduce too quickly? If so then maybe try and negotiate a slower taper overall with him -is he open to suggestions? Although looking at your profile you do have a lot of other things going on as well -which doesn’t help either, so another reason to taper more slowly.

We all know some Rheumies adhere strictly to the guidelines, but some forget to read the additional advice to adjust it to individual circumstances -and if you have flared more than once, perhaps yours should be considering that…if current way isn’t working.

If you flare again, and can catch it quickly you may be able to follow the suggestion in my link..but if you need to stay on the higher dose for more than 2 weeks your taper back down will need to be a bit more slowly -but at least it won’t be from 20 or 30mg.

Fingers crossed you don’t need to!

[Nightingales in reply to DorsetLady]

The last two times it’s been on the DSNS plan. There doesn’t seem to be a warning or common theme to the flares, possibly stress. It seems more like a relapse. I can cope with the pain but I don’t know what the high CPR is doing to me and worry about ignoring it. But as you say let’s hope it doesn’t happen again. We are trying to find. DMARD to add in. Thank you Dorset lady.

[PMRpro Ambassador in reply to Nightingales]

The high CRP is a signpost - it isn't doing anything itself athough the inflammation that it signals maybe is. Do the flares happen at a similar dose?

[Nightingales in reply to PMRpro]

They happen at increasingly higher doses. 3 mg first one, 6 mg , then 9 then 11mg . I did a DSNS the last two.

[PMRpro Ambassador]

The trouble is you don't know if it was a flare just due to the infection or overshooting the dose of whether it was a real increase in disease activity. Many doctors make that mistake and send people back to the start unnecessarily. But what is done is done and either way, it has sorted it out. I would be inclined to try going to 7.5mg for a few weeks and if that is good, try 5mg. But if either fails, go back and go 1mg at a time.