Free of morning pain?

[Trainy]

I was provisionally instantly diagnosed by my GP a month ago. Blood tests seem to have confirmed it. I've been on 15mg pred daily for 3 weeks with instruction from GP to reduce to 12.5 onwards. I have since spoken to a retired but experienced rheumatologist who suggested I should have started on 40mg. Am I correct in thinking this is a balance between pain in a morning and side effects of steroids.? Have to roll out of bed onto floor and haul myself up from there, too much pain and weakness to stand up immediately. By lunchtime no pain, just a low level nausea and overall fatigue but standing up is restored. Got another consultation with GP who thought 15mg was a high starting point.. There seems to be so many variations with PMR that I am struggling to take in all the information on this tremendous site.

[PMRpro Ambassador]

Are you relatively free of pain once the pred has worked?

They are both wrong. 40mg is the starting dose for GCA - not PMR. 15mg is the traditional starting dose for PMR but the 2015 guidelines say the lowest effective dose in the range 12.5-25mg. 15mg does work well for a lot of people but 20mg is probably more appropriate for most and a study found that 12.5mg achieved good relief within a month for 75% of the subects, better and faster in small women and less good in larger males. Some logic there really.

The morning pain persists if you are a person for whom the antiinflammatory effect of pred lasts less than 24 hours - it can be between 12 and 36 hours depending on the person. It also has a bit to do how quickly the dose you are on clears out the existing accumulated inflammation - bursitis and tenosynovitis takes longer than the muscle stiffness and pain for me the muscle stuff was gone in under 6 hours, the rest was more like 3 months.

My suspicion is that your GP should try 20mg to see if it gives a significantly better result and he definitely shouldn't be telling you to reduce the dose until the symptoms are as well controlled as possible and the blood markers have fallen to normal levels. Starting at 15mg really means you leave the patient there a bit longer - 4-6 weeks is much more sensible.

This

ard.bmj.com/content/74/10/1799

has the starting dose recommendation and this

rcpe.ac.uk/journal/issue/jo...

is an approach we know works rather better than the speedy reductions that seem to be the fashion currently and probably are due to the NICE recommendations which are a bit strange to anyone experienced in PMR!

There are ways to deal better with intractable morning pain - but first of all your GP needs to get the spring-cleaning done and the existing inflammation dealt with. In the meantime, the earlier you take the pred, the less inflammation has been created with the daily shedding of new inflammatory cytokines so the pred works faster and more effectively. New inflammatory substances arrive every morning about 4-4.30am - and get to work creating inflammation until the day's dose of pred kicks in.

[Trainy in reply to PMRpro]

Thanks for the advice. I've noticed the pain starts about 4am and builds up to a peak at 5am when I usually take the pred, I'll try taking it earlier. Pain has cleared by mid morning then returns the following morning. Reluctant to take painkillers following a very scary reaction to another medication I was taking.

[PMRpro Ambassador in reply to Trainy]

A study in Germany established that the ideal time to take pred to reduce the early morning pain is 2am (for prednisone, you can get away with a bit later for prednisolone, up to about 3am). The painkillers almost certainly wouldn't achieve much - few of us find anything other than pred does anything for the pain. But if you are OK up to 4am, that sounds as if it is working for most of the 24 hours - which is a good start.

[Trainy in reply to PMRpro]

Yes, thank you. I reluctantly tried the painkillers in desperation to try and achieve sleep before I'd even heard of PMR, and of course they had almost no effect. Does this mean breakfast at 3am?

[PMRpro Ambassador in reply to Trainy]

Not necessarily - a glass of milk or some yoghurt is probably enough for most people. Others eat a banana or some cheese. If you are on a PPI or other stomach protection you can take that before bed. Some people take the pred late evening - while their evening meal is still in the stomach. And if your GP was kind enough to offer enteric coated pred, that works very well for early morning relief when taken before bed as it takes 4-5 hours to get into the system and doesn't irritate the stomach.

[Bcol in reply to Trainy]

Morning Trainy. I take all my Pred at around 02:00 every morning, usually with a banana and some Greek Yogurt which has worked fine for me.

[Trainy in reply to Bcol]

Not sure 2am is viable for me. Managed 3.30 and it certainly made a massive difference to my morning. I had assumed that breakfast , as in 7 to 8 am, was the correct time. Still learning. Thanks everyone.

[jazzgirl80]

I'm on 15g and feel great, was on 30g, which didn't agree with me.

[Trainy in reply to jazzgirl80]

15mg with breakfast at 2.30 this morning. First pain free day in months. Couldn't contact usual GP for update. Different, rather arrogant GP wants me to go to 12.5 from 4th week.