PMR with normal blood work. Spacey on prednisone

[RHR76]

I’m not a typical case. Blood work mostly normal. Pain in one arm and bilateral lower Back Hips and hamstrings. On 20mg prednisone. Very spacey and lethargic with little sleep and palpitations. Anyone else with normal blood work. Reaction to prednisone? Also, pain decreased by 80% on meds. Not 100%

[SheffieldJane]

One in 5 people present with normal bloods ie no inflammation showing up. Pain relief can be anything from 100% to 70% any less throws your diagnosis into doubt or your dose is too low. My initial pain was bilateral groin pain and I couldn’t raise my hands above my head. I had many strange feelings on Pred initially eg. jittery, spacey, a bit unreal, hyper, voracious appetite, quick to anger, insomnia. They got less as time went on and my dose reduced.

[RHR76 in reply to SheffieldJane]

Thank you. It means a lot to hear your experience with this

[Abbey17]

My bloods are always normal right from the beginning but all my symptoms are typical PMR. My GP still regularly takes bloods but says they are not really helpful in my case. Not savvy enough to understand it myself.

[RHR76 in reply to Abbey17]

I started to doubt the diagnosis but now realize each case may vary. Thanh you

[SnazzyD]

Hello, 20mg is enough to make you feel quite peculiar, like a stimulant and a depressant at the same time. It does reduce with dose. It can make you feel sharper than you are so do be careful with driving or anything that requires lots of concentration. Do the to rest even if you feel you have drunk 25 coffees. Normal bloods is more common than you think and Pred doesn’t always cut the pain immediately. Make sure you haven’t just gone back to normal because that won’t help.

[RHR76 in reply to SnazzyD]

You make a good point about driving which I have decided not to until this spacey feeling is reduced

[Twinkling1]

Mine too bloods normal, but typical symptoms. Pain left side shoulder, hip thigh down to knee right side shoulder, elbow, fingers and hip. 2018 diagnosis but had symptoms for over 2 years, dreaded going to bed pain was incredible, also weight loss of 50 pounds, during that time I was tested for all sorts of things, until I moved and registered with a new surgery and they came up with PMR it has been rocky a few flares but managing. Reaction to meds difficult moments depending on dosage the lower you go the better. But rather deal with that than the pain. Good luck 😊

[RHR76 in reply to Twinkling1]

Thank you for sharing this

[PMRpro Ambassador]

If you asked - most of us could be considered atypical for one reason or another since doctors have a very blinkered view of what a patient with PMR should look like, assuming a very narrow set of criteria applies to everyone - which it doesn't. In some cases it is merely ignorance of studies - knees are often said not to be involved in PMR, I have just looked at a study from 2013 and from a renowned name in the field with evidence knees are involved:

academic.oup.com/rheumatolo...

A lot of us have blood markers that are not or only very slightly raised. Mine were never "outside normal range" - that didn't mean they weren't actually raised for me. My ESR is naturally in low single figures, at one point during a severe flare it ran at 16-18 for weeks which attracted no attention as 20 is the top of the range.

Very few people achieve 100% pain-free even on higher doses of pred - did your GP lead you to believe that would be the case? That you would be totally back to normal and able to do everything as usual once you were on pred? Unfortunately that isn't the case - not least because pred itself has some downsides, especially at the start at higher doses and until your body gets more used to it.

It will improve with time and as you reduce your pred dose - has your doctor offered any instructions or advice on that?

[RHR76 in reply to PMRpro]

I was supposed to reduce meds to 15 but went back to 20 as symptoms got worse. Thank you for replying

[PMRpro Ambassador in reply to RHR76]

Then next time try reducing to 17.5mg - that is really about the maximum that is reasonable at this stage. Top experts say no reduction step should be more than 10% of the current dose and 2.5 is a bit more than that but down to 15mg it is usually fine. If it isn't - then it means 1mg at a time if you can get 1mg tablets. You will need them later anyway so they might as well get round to it now.

Using a slowed taper also helps and you will find links to the various options we talk about here:

healthunlocked.com/pmrgcauk...

[Jackoh]

Yes I have always had normal blood markers even when GCA came along to play as well as PMR. My previous GP was always of the opinion, unfortunately, that low blood markers meant that the PMR was inconsequential and I would get off pred so much quicker. This was not and is not the case so please don’t fall into that trap. Xx💐

[RHR76 in reply to Jackoh]

Thanks for the advice

[PMRpro Ambassador in reply to Jackoh]

If only eh!!!!!