HI - AM A NEWBIE -

[winter10]

Discovered site yesterday pm after having full bloods taken a.m- G.P saying could be PMR - results due Tues. Learning lots on this site - whats the reason that this pain flares up during sleeping hrs and you feel almost paralyzed just trying to get out of bed - upper arms/shoulders mainly in my case, takes approx. 3hrs for this to feel almost normal again - also tight pulling feeling in calves Am 74 yrs old and always quite active - now feel bit down that my life will have to alter quite a lot to help me fight this if it is PMR - welcome any advice or comments from you. Thankyou.

[PMRpro Ambassador]

The reason mornings are worst is that the body sheds a new batch of inflammatory substances each day at about 4.30am - some people find they can get up at 3am and go to the bathroom and have little or no pain and are not stiff. On the other hand, at 5am they are so stiff they cannot move easily. As you have noticed, during the day that improves as you get moving.

Wait and see - if the GP decides it is PMR and decides to let you try a moderate dose of prednisolone (15mg is fairly usual) you may find you don't have to change you life a lot! In under 6 hours I could move normally again!

You will find lots of links for information here - quicker than trying to read and read on the forum!

patient.info/forums/discuss...

But fighting PMR doesn't work - it wastes energy! The pred will manage your symptoms but the illness itself carries on in the background meaning your muscles remain intolerant of acute exercise and causing fatigue. You have to manage that by lifestyle adaptations. I am a bit younger than you - but PMR doesn't stop me doing much although it gives me a wonderful excuse not to do housework! I still travel widely, I have given up skiing now but that was for other reasons. It all depends what activities you mean!

[winter10 in reply to PMRpro]

Many thanks for your reply - made me smile about excuse for not doing housework - - as long as I can just keep pottering in my patio garden when spring comes - but shall wait and give that further thought when I get the results on Tuesday , thanks again.

[Rugger in reply to PMRpro]

I've been wondering, since reading about the discussions about gastro-resistant prednisolone tablets and whether to split the doses - Why are we told to take our pred in the morning, with breakfast and why not take the full dose with our evening meal, to be closer to the time when we seem to really need it? I don't know what the half-life of pred is and perhaps it doesn't matter once the regime is started, but am I missing something?

Happy New Year to you all.

[PMRpro Ambassador in reply to Rugger]

Ordinary pred takes about an hour to be absorbed, reaching its maximum level in the blood within 2 hours. The half life is about 3 or 4 hours so pred is cleared from the body relatively quickly although the antiinflammatory effects lasts for 12-36 hours depending on the person. I'm a 36 hour person, in the past I could go 2 days between doses without problems, don't know if that is still so. Others find that by evening the pain and stiffness is returning - they are 12 hour people.

Every morning the body sheds a dose of new inflammatory substances in the body at about 4.30am which then start to create the damage and inflammation in the body. The sooner after this you take the pred the less damage has happened and the less inflammation it has to deal with. A study done in Germany showed the optimum time to take pred to avoid morning stiffness was 2am so the peak was reached at 4am, just before the cytokines appeared on the scene. On the back of this they developed a form of pred, sold as Lodotra in Europe, Rayos in the USA, which has an outer coating which cracks open after 4 hours in the stomach with food - must be with food, doesn't work otherwise - you take it at 10pm to release the pred all in one go at 2am and lo and behold - no morning stiffness! Many people get up early and take their pred and settle down for another couple of hours until the pred starts to work and the pain and stiffness recede.

Another supporting fact for the morning dosing of pred is a study done in Holland some years ago that showed that 5mg taken at night suppresses adrenal function more than 15mg taken at 8am. So doctors are convinced that morning dosing is the only safe way. That may apply for patients on a short course of pred, just a few weeks, they can take it in the morning and stop without any adrenal problems. We, on the other hand, are on a high enough dose of pred for months, even years, and adrenal function is inevitably compromised eventually. In that case, I maintain you might just as well take the pred at the optimum time for YOU, and you alone!

So - if you are on plain white pred, taking it in the evening with dinner would probably mean there wouldn't be an adequate antiinflammatory effect in the early morning, it is about 6 hours too early. Enteric coated on the other hand takes about 6 or 7 hours to reach its peak in the blood, taking it in the morning would mean a longer time before it worked effectively for most patients. It might work taken about 10pm - no studies have been done.

Everyone is a bit different so a bit of experimentation isn't unreasonable - though there are doctors who would disagree. There are patients who found the pred side effects were diminished and daytime pain control was fine when they took their pred at night before bed - and it didn't affect their sleep. Early morning is felt to be better for that too - longer for that side effect to go away. Others find splitting the dose gives them better evenings and mornings. But what works for you is the important thing.

[Rugger in reply to PMRpro]

Thank you so much for your reply. It gives us lots of food for thought. I don't know what we'd do without you, PMRpro!

[olive2709]

Hi , this illness is not known for its timing just hold on , you will be ok

[winter10 in reply to olive2709]

Thanks for your reply - just waiting for Tues. results now, cos if its not PMR then I haven't a clue what it is !!!!!!

[PMRpro Ambassador in reply to winter10]

If your blood tests are NOT raised it doesn't mean it isn't PMR. About 1 in 5 patients don't have raised ESR or CRP but still have PMR. It is a clinical diagnosis - made on signs and symptoms and response to moderate dose of pred. So don't let the GP tell you that the blood tests don't show anything so it can't be PMR. There are other things it could be but he should have ruled most of them out with blood tests - and if he can't work out what it might be you need to see a rheumatologist.

[winter10 in reply to PMRpro]

Thanks for your reply - will take your advice on board.

Happy NEW YEAR

[DorsetLady PMRGCAuk volunteer]

As PMRpro says, you don't have to stop living, just adjust it slightly, with a little more TLC. That never did anyone any harm did it? Plus hopefully, if it is PMR and the Pred is at the correct dose virtually pain free (although, not always) - and that ain't bad either!

It's not the end of the world, and don't fight it, just adapt to it - that's what we humans do!

[Joannemoss2000]

I am very new to PMR too! Had blood results last week and it was suspected I have PMR. Have suffered from groin and shoulder pain for a few months which I assumed weren't linked. I suffer from hip misalignment issues so assumes that this was linked to the groin pain. The onset of shoulder pain was a bit random though as I have never had any pain in my shoulders. It is only one shoulder that is the problem though. I had quite a bit of relief the first day I too Prednisone and managed to reduce the Naproxen. I am still in quite a bit of pain first thing in the morning though. I am so glad I have found this site as I had never even heard of PMR before last Friday. I'm not keen on taking steroids but I am at the end of my tether with the pain so will try anything. Does anyone else take Naproxen alongside the Prednisone. I am currently on 15mg of Prednisone and am getting reviewed this week with the GP. Any replies would be very welcome

[PMRpro Ambassador in reply to Joannemoss2000]

This is a very old thread Joanne - try starting a new thread of your own and ask the question - then everyone will see it. Only people who "followed" this one will see this.

[Joannemoss2000]

Ok thanks. Will do