PMR

[rustyrussell]

Im new to this and been on steroids' now for a week and do feel better for helping the pmr but i do wake up sniff in the hips groin and shoulder area still.is this normal after a week?

[Mary63]

What dosage are you taking?

[rustyrussell in reply to Mary63]

Hi im on 15mg

[PMRpro Ambassador]

It may remain "normal" for a long time. The inflammatory substances that underlie the inflammation causing the symptoms are released every morning at about 4-4.30am. The longer it is after that before you take the daily dose and it gets into the system, the more new inflammation is created, the more work the pred has to do and the longer that takes. The optimum time to take pred to reduce morning stiffness was found in a study to be 2am - the pred is at its peak in the blood stream by 4am and the inflammation never gets to take hold so no symptoms. A delayed release form of pred was developed as a result but it is not widely available outside mainland Europe/the EU countries and although available in the US it is extortionately expensive.

Some people find taking pred before bed works well for them and doesn't keep them awake. Others wake early, take their pred and settle down for another couple of hours to allow it to work. Yet others find that the effect doesn't last a full 24 hours so they split their dose in two, most early in the morning, the rest later in the day so it works best for them, everyone is different and you need to try various approaches to find the best for you. However - my hip pain took a few months to go altogether although most of the PMR muscle pain and stiffness was greatly improved in a few days. Be patient.

[rustyrussell in reply to PMRpro]

Thank you so much for that information .Im 54 and the PMR came over night and for 2 months i struggled with not knowing what it was. My ESR came back as 26 and CRP was 35 and thankfully all other tests came back ok .I will mess round with dosage. Thank you once again

[PMRpro Ambassador in reply to rustyrussell]

I think I would just be patient for a week or two - at 15mg you are on the bottom end of the starting dose for PMR and it may be you just need a bit more time to get the underlying stored up inflammation cleared out . It is better to get some idea of your PMR and your response to pred first - not everyone gets the result in a few hours. I did - but it hasn't been the forerunner to an easy journey with PMR believe me!

What sort of result have you had with 15mg? Is it at least a 70% overall improvement in stiffness and pain? If not, maybe ask your GP if you can try 20mg and see if that is significantly better? The 2015 Recommendations give the starting dose as "the lowest effective dose in the range 12.5-25mg"

rheumatology.org/Portals/0/...

Recommendation 3

But remember, what goes up will also have to come down again at some point!

[rustyrussell in reply to PMRpro]

Hi once it kicks in {takes about 4 hours} there is a improvement and find i can walk a bit better now .i would say yes about 70% improvement after but in the mornings its better some than others and not always straight away .sometimes about 30mins after getting up its worse. Then as the day goes on where i cant lift my leg without pain i can no problems later with no stiffness in the same place

[PMRpro Ambassador in reply to rustyrussell]

Are the worse days associated with having done more the previous day? The pred doesn't allow you to go straight back to normal activity levels - it is just to make things more comfortable. You will be able to do more later but for now keep things down, short gentle walks rather than hikes!!!

[rustyrussell in reply to PMRpro]

Hi i had broken a few cardboard boxes up but that was it really

[PMRpro Ambassador in reply to rustyrussell]

That is a job I find can make my arms and hands very uncomfortable - I think it is the arm movements, and even cleaning a window or 5 minutes vacuuming makes my back ache.

[rustyrussell in reply to PMRpro]

yes by the sounds of it I'm in for a long journey .Always kept fit could walk 20miles at a time etc and over night it happened .unreal really. how does a alcohol affect it? also covid 19?

[PMRpro Ambassador in reply to rustyrussell]

How does alcohol affect what? In the 5 years I had PMR without pred one of the few things that helped was my evening glass of wine!!!

[rustyrussell in reply to PMRpro]

With the pred? Like you i like a glass

[PMRpro Ambassador in reply to rustyrussell]

I have given up my G&Ts recently as they definitely trigger my tachycardia/atrial fibrillation - BOOOOOO!!!! But wine - no probs!

[rustyrussell in reply to PMRpro]

Nice to know thank you for all your help and im sure i will have a few more