I'm a patient really interested in research and wondering if there are others who also have questions about their disease, like why stiffness is worse in the mornings and what causes the creaking sound in my joints and things like that. Does anyone else also think about these things or notice trends that they wish someone would do research on?
Stiffness in the morning is a common problem, it just means that you are one of the patients whose dose of steroids doesn't quite cover the 24 hours. If it is really having an effect on you talk to your doctor and see if you can split the dose with the larger amount in the morning and the lesser amount just before bedtime.
About the joints - I've no real explanation, except that mine do make the most loud cracks, I just put it down to getter older and therefore not so much fluid in the joints. As long as it doesn't hurt, I just ignore it. Having said that, when I have had to regular exercises (post op) I've realised that it doesn't happen so much so maybe stretching exercises might help?
There is a whole load of research going on worldwide.
Omeract, Eular/ARC in Countires from all over the world are involved with. The UK is heavily involved and started up most of it.
You can find all about it by using your search engine and typing in PMR&GCAuk North East Support (we have provided patients for Clinical Trials (one of this trials has nearly ended Giacta for GCA)
PMR &GCAUK and PMRGCA Scotland. All carry a wealth of information.
'Living with PMR&GCA' a booklet written by patients for patients (and medically checked) has been written and over 700 copies sold worldwide - available from PMR&GCAuk North East Support.
Two Books written by Kate Gilbert and available on Amazon with the proceeds going to PMRGCAuk.
All have websites and all have load of information on current research.
It is all out there. What is more on this thread we have just posted about a Research project which we are asking people to take part in.
Have a good read and perhaps consider joining one of the charities as they are all small and need members - without members - no funding.
Two of those charities are run completely by volunteers.
One of them has one paid employee for 3 days - the rest done by Volunteers.
The joining fee is no more than one pound per month at the most and some of the support groups only charge £3 per year - others up to £12 per year.
You can try Pub- Med too in US. I don't think any studies are about why you are stiffer in the morning. Because so many studies are done by drug companies, and because theoretically PMR is treated by a generic drug Predsisone that's been out there for a long time, as well as the fact that people don't die of PMR, I don't think it's the best studied disease.
Thanks for the advice! Yeah, my doctor did mention something like splitting my dose into two sections, but I guess my main question is why it happens in the first place. I was thinking if people knew what was going on to create the stiffness just in the morning, maybe they can find out something about pain and how it works and create better therapies. But because doctors/researchers don't have the diseases they research, they wouldn't ever know that it's important to have research being done in that area. As a patient I feel like I have a lot of questions that doctors would never think of investigating, and I was just wondering if I'm thinking too much about it or if this is something that others feel as well. Maybe I'm just thinking too much about it
Thanks for the references! I checked out a lot of these resources and they look fascinating. Thanks!
Yeah, very true about a lot of studies being funded by large companies - I definitely couldn't find anything about why the stiffness in the morning. But I guess I could just be overthinking it and it's not that important? Not sure
You imply that morning stiffness is common to all all patient already being treated for PMR with prednisone. I suggest we know the reason - these patients are not getting enough pred to see them through 24 hours, and this is why dose splitting is helpful. It's so dependent on individual metabolism I wonder if traditional research on this particular symptom could actually be performed? We may have to continue to rely on anecdotal experience - but even recording that would be helpful as part of the guidelines for effective dosing.
I also want to suggest that some morning stiffness may have nothing to do with PMR. The reason I say this is because I've had morning stiffness as long as I can remember. When many years ago I was given physio exercises to do twice a day I wondered how I could manage to do them first thing in the morning. It ended up being no problem, but this is why I remember what life pre-PMR was like. PMR, on the other hand, gave me painful symptoms around the clock, I honestly can't say they were worse in the morning than at any time when I'd been at rest for more than a couple of minutes. Pred cleared all that up. So now if I'm feeling a little temporary morning stiffness I don't think I can blame either PMR or pred. What I do have to watch out for is if that "morning" stiffness recurs throughout the day. What experiences have others had?
Wake up wait 5 mins - sit up - wait 5 mins - go and have warm shower - wait for 5 mins - get dressed - stiffness gone.
Rule during the day - never sit for more than one hour - get up and move around - get that blood flowing into your muscles.
Do not sit watching TV or using computer or stay in any postion, unless sleeping - for more than one hour.
Short answer you really need to purchase the 'Living with PMR & GCA' six pages ot Tips and Tricks supplied by Patients for Patients.
Long answer - your adrenal glands are put to sleep by the pred. They don't work as the pred gives you enough to keep them content.
However when your adrenals are working they replenish between 2am and 3am, so you have get up and go in the morning.
So the trick is, is you wake up say anytime after 4am - a hot drink (in a flask by your bedside, a sandwich (wrapped in foil) drink, eat and take your pred. Go back to sleep and when you get up a warm shower.
Bingo...............
On the other hand, why couldn't it be a thesis subject at a medical school?
Read 'The Spoon Theory' - put it in your search engine.
I've read it and shared it widely. I don't seem to have very many spoons. But, you know, I think I came into the world somewhat lacking in spoons. I can remember always feeling overwhelmed by energetic people who did lots of things. People who didn't mind playing hockey or who actually seemed to enjoy chasing tennis balls! Or could happily scrub their houses to sparkling perfection. And maybe I developed PMR partly because I tried to live like that and never really had enough stamina?