After 2 yes and a taper to half a mg daily, now have infections and started a full flare up

[Allum]

Advice please, don't know what dose to take? Posted a couple of weeks ago, as I had tapered slowly over two years and was on last half a mg Prednisolone daily, when hands and wrists became enflamed. Tried increase to 5mg daily for a week, returned to 1mg . Then got tummy bug, followed by Diverticulitis! Treated with antibiotics, but then got cystitis which is currently being treated with another week of different antibiotics! Did some shopping yesterday and after carrying bags to car, had lots of pain in arms. Hips and knee pains followed, so now realise this is full PMR flare!Please help advise of best way forward with dosage?

Need your opinions please?

[Bcol]

Hi there, sounds look you are having a rough time. The link below will take you to the FAQ'S page and information about how to treat a flare.

healthunlocked.com/pmrgcauk...

[Allum in reply to Bcol]

Thank you!

[DorsetLady PMRGCAuk volunteer in reply to Allum]

Bcol has kindly linked my post -hope it helps….

[Allum in reply to DorsetLady]

Yes, that makes sense. Will try that and hope it all clears up. Thank you 🙏 xxx

[DorsetLady PMRGCAuk volunteer in reply to Allum]

Just back to 1mg not 0.5mg. At such low doses 0,5mg really does make a bigger difference than many realise…. And at 2 years or so your PMR is definitely “still there!” 😊

[Allum in reply to DorsetLady]

Yes, it's easy to forget when things are going smoothly and everyone expects you to be back to your old self! It's quite shocking to think that I can't even carry my shopping without considering the consequences! I will up my steroids and take things slower. Thank you so much for being there, I have been feeling so very tearful that it's good to have this forum to turn to.

[DorsetLady PMRGCAuk volunteer in reply to Allum]

You're welcome, and being tearful may also be a sign that your adrenals are still struggling a bit...and likely to for a while.. So maybe once you got through this blip, stay at 1mg for a good while, that will help adrenals, and winter is a difficult time for many to reduce.. one sensible rheumy once suggested you didn't even try during the winter months.

[Allum in reply to DorsetLady]

Ah! That's also good to know, as I have a friend who is also trying to taper . 👍

[cherrysteps]

Yes I agree with the FAQs page link below.

[Hidden]

Can't offer much advice on this. After first diagnosis GP started on 20mg/ day then reduced the dose far too quickly when the pain reduced. After a few weeks the symptoms came back with a vengeance. My current GP gave me a print out of the NICE (National Institute for Health and care Excellence) guidance, which starts on 15mg/day prednisolone for about 3 weeks, then 12.5mg for 3 weeks, 10mg for 4-6 weeks then reduce by 1mg every 4-8 weeks until treatment is stopped. I'm only at the 12.5mg stage, and hoping that the symptoms continue to reduce and go away eventually.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

But they are only guidelines and the actual wording from NICE before the taper quoted is as follows,-

Reduce the dose of prednisolone slowly when symptoms are fully controlled. A suggested schedule for reducing prednisolone is provided below, but smaller dose reductions and longer durations at each dose may be needed to avoid relapses in some people. Typically, treatment is required for between 1–2 years.*

*not for everyone…

Also from the BSR and BHPR guidelines

We recommend initiation of low-dose steroid therapy with gradually tailored tapering in straightforward PMR

Note the comment “straightforward” PMR.

Hopefully yours will be, but there a lot of doctors don’t appreciate everyone’s PMR is not straightforward.

[PMRpro Ambassador in reply to Hidden]

This is interesting since Prof Sarah Mackie told me that NICE don't actually issue proper clinical guidance - just stuff written by a third party supplier and in my experience whoever it is just reads something and compiles an article.