How to know when PR has burned out

[Theziggy]

I'll be down to 2 mg prednisilone come the New Year - so how will I know when my Palindromic Rheumatism has ended?

Happy New Year to all the forum members

Stay Safe

[Seacat30]

Haha I saw the Rheumatology Consultant for the first time. She swears that I don't have PMR now. This is based on her observations of my movements (and my last 2 sets of blood tests). In fact she insists that I have nothing rheumatological the matter with me. I was sent for a spinal x-ray yesterday and I am off to have a blood test today. We will see what that shows. I guess that my inflammatory factors will be raised based on my pain levels but will have to try to reduce unless she contacts me to say no. On 2mg and set to go down 0.5mg every 3 weeks from tomorrow. She intends to send me back to physio possibly of the spinal variety. Oh dear me!

[PMRpro Ambassador in reply to Seacat30]

Huh - 2mg is plenty to keep PMR nicely under wraps! She can't tell until you are off altogether and nothing nasty happens! And for goodness sake - it is also loads to keep you functioning from the adrenal point of view - reducing at that rate is likely to be too fast in that context. Where do they get their knowledge from ...

[Seacat30 in reply to PMRpro]

I only stopped my GP's medication review just before Christmas by saying that I would be going to Rheumatology. They have got me in a pincer movement. Unless my blood test results foul it up I have to give it a try.

[PMRpro Ambassador in reply to Seacat30]

Just keep a weather eye out for the effects of an adrenal crisis: weakness, confusion, etc etc

my.clevelandclinic.org/heal....

and if ANY of them appear, take at least 10mg pred and seek medical help. If you end up under any stress of any sort be especially aware. Carry some pred with you at all times and warn the people you live with. I know it sounds dramatic - but an adrenal crisis is dramatic.

I don't suppose anyone has thought to do a basal cortisol test? That would at least tell you if you are very at risk (cortisol under about 100) or perfectly OK or if you are getting there. All it needs is a blood sample taken in the morning between 9am and lunchtime.

pubmed.ncbi.nlm.nih.gov/286...

[Seacat30 in reply to PMRpro]

Thanks will do. No suggestion of cortisol test.

[PMRpro Ambassador in reply to Seacat30]

Mention it to the GP - that's why I added the link in case they think it is woo on the web

[Seacat30 in reply to PMRpro]

Not sure that is possible?

GP access limited again

[PMRpro Ambassador in reply to Seacat30]

Well I'd consider you a vulnerable patient - a long term corticosteroid patient who has been ordered to reduce their dose somewhat precipitately which COULD put them at risk of an adrenal crisis. Which can be a life-threatening event. It would be nice to think they cared enough to avoid that potential situation by writing a request for the nurse to take a blood test.

What is happening is they are creating extra chaos in the ED because they are not catching illnesses at a mild stage - and by the time they get to the ED they are "proper poorly".

Whatever you do - wait until after next BH weekend before starting to reduce because there's another 3 days the only people working are the ambo service and the ED.

[Iamfedup in reply to PMRpro]

I am in a similar position to SeaCat and have been told to reduce by half a milligram a month. I have said no that I will reduce by a quarter of a milligram as advised by experts on this forum who have helped me over the last three and a half years!

[Theziggy in reply to Seacat30]

I had no inflammatory markers , I had to convince my expert consultant that I had PR

No medicines etc

[Seacat30 in reply to Theziggy]

I did at the start which is what convinced them that I had PMR.

[PMRpro Ambassador in reply to Seacat30]

Just wanted to point out that PR isn't a typo for PMR with the M missed out. Theziggy has palindromic rheumatism, different thing but there isn't a forum and many of the problems are similar.

[Seacat30 in reply to PMRpro]

I noticed but we have been discussing my little conflict too.

[Theziggy in reply to PMRpro]

steroids are used for both

[PMRpro Ambassador]

Oooh - now THERE you are asking! Don't think anyone knows - nor have they studied it.

autoimmune.org/disease-info...

How do you use your pred? Has it worked for you the way we use it? From what I have read PR comes in short recurrent episodes a bit like gout so I would expect short courses of pred would work in the same way it can be used for gout. OTOH, does remaining on a low dose prevent recurrences?

[pmr_nikola]

It took me about 2.5 years to get down to 2mg and it took another 3.5 years to go from 2mg to zero. First time I was at 2 I was very enthusiastic that I am "almost done". Just be careful and do not rush to zero. You will consume far less prednisone if you take time. If you rush, most likely you will cause flare and then you must take much higher dose.

[Theziggy]

I wouldn't mind staying on 2 mg for the foreseeable future

[PMRpro Ambassador in reply to Theziggy]

If it is keeping the PR at bay successfully - why not?