I know the symptoms of PMR are usually worse at night and in the morning - but does anyone know why? I have been unable to find any information regarding the cause of this phenomena - yet they are (at least morning stiffness is) important diagnostic criteria for PMR. Just would like to understand this, as well as satisfy my curiosity. Thanks in advance for any light you can shed on this subject.
I am new to this forum and new to PMR (diagnosed ... - PMRGCAuk
I am new to this forum and new to PMR (diagnosed 10/24/16). I have begun to research PMR and have a question.
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Dinty123
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Ah well - that is something we in the charities have been trying to fight a bit! And we are getting there!
The perception on the part of doctors has been that it is like other forms of arthritis - morning stiffness. And then there is myogelosis - the muscles stiffen again after sitting for more than a few minutes. For many patients it all fades into a general landscape - and you are more or less stiff more or less all the time. There have been focus groups done with patients to identify criteria for studies that will apply all over the world. Almost all patients have said the same, it isn't JUST morning stiffness, it is there all the time. That has been adopted i think.
Actually I found (and I am not the only one who has said it) that I could get up at say 3am and was fine but come 5am I could barely move. During the day once I could get moving the stiffness improved - especially after a session of aquaerobics in a warm pool or quarter of an hour in the steam room. A glass of wine also could work a miracle! This is all probably because all these things lead to vasodilation, the blood vessels dilate and the blood supply to the muscles is improved. This was all without being on pred.
The body sheds substances called cytokines in the body at about 4.30am and some of them are inflammatory. So before that you may be OK, sometime after that they have started to take effect. But everyone is different and if your PMR is bad enough then the stiffness will last 24/7. And since your muscles are intolerant of acute exercise - if you do too much then they will be stiff later, just as would happen to anyone if they really overdid things. So if you have done too much during the day - you could well be extra stiff at night.
Thank you so much for your prompt and informative reply. But in almost everything I have read it states that morning stiffness (= or > than 30-45 min) is one criteria for diagnosing or at least differentiating PMR from other similar syndromes. I have only had PMR for about 3 mos, but I do have terrible pain at night (can't roll over in bed) and also pain and stiffness in the morning for about an hour. During the day, I'm pretty good, although lately the back pain has started to come back in the evening and I'm beginning to feel exhausted during the day and often have to take naps. It's all rather confusing, as PMR seems to manifest differently in everyone who has it. So, your reply was very helpful to me, as I am trying to understand and learn about this complex condition that abruptly entered my life uninvited.
Thanks, didn't know other forms of arthritis also had morning stiffness, so appreciate the information. Do these other types of arthritis also have the strange manifestations of the 'stiffness', i.e., can' get up from a chair, can't put pants or sox on, can't turn over in bed? I was in shock the first time I couldn't get up from a sitting position. I said to my husband, 'I can't get up!' He thought I was joking.
But to answer your question, yes, I started on Prednisone when I was diagnosed, so this is my 3rd day taking it. I am on a very low dose compared to what it seems others are taking in this forum (5 mg in AM and 5 mg in PM). But already I have had relief at night, so sleep better, and yesterday felt less fatigue and didn't need to collapse on the couch and nap (hooray!). Still have the morning back stiffness/pain as well as evening back stiffness/pain. (By the way, I always felt that this was pain (not stiffness) but it seems the literature refers to it as stiffness - don't know how they define their terms - just another confusing aspect of this condition.)
Why are you taking 5mg and 5mg? The recommended approach which works well for the majority of people is to take the entire dose in the morning - which hits the inflammation (which develops in the early morning) hard before it gets fully established. You will always get some morning stiffness - the earlier you take your dose of pred the better the result. Some people wake early and take their pred a couple of hours before they want to get up - by then the pred is working and the morning stiffness is being dealt with.
Sorry I missed this response from you - disregard my first question in my reply that I posted to you. Thx
I felt a lot better once i started taking all my dose within a few hours in am. i had been spreading it through the day, then read an earlier comment you wrote on it & tried it. thx ☺
Hi, I started out on 10 mg. pred. and it was NOT enough so went to 15. 10 in the a m and 5 in the early afternoon, that way I avoided the siffness at night and it seemed to "last" until the early dose. My my arthritis Doc. seems to be o k with it. Taking it "early" (ALWAYS with food) afternoon did not interrupt my sleep. I've been on it since late March and have weaned down to 5 mg. o k so far. (seemed to have gotten this after a "viral bronchitis" and was also very deficient in vitamin D. Have done a lot of reading and have ran across some things about shingles shot (which is a live virus) and contracting PMR...of course could be just a conspiracy theory..but you never know. Look how many of us there are..makes you wonder!
This is a very old thread - in case you hadn't noticed - so don't be surprised if you don't get a response.
By the way - there are probably far more people on the forums who HAVEN'T had the shingles vaccine as it is a relatively new offer in the UK and many of us are from there as this is a UK charity forum.
Thanks for letting me know!
I happen to have had the shingles vaccine sometime last year. I was not diagnosed until October 2017. Here in the U.S., news just released is encouraging everyone to have a revaccination of the new vaccine. Apparently they feel it is a much stronger protection.
Thanks for pointing they all thread out. Following behind other recent post I guess we should scroll back a bit more to make sure it's current.
Mine is not stiffness but pain, at its worst, discomfort, buzzing, itchy at its least. I used to be better after vigorous sports, but now am slightly worse. I usually feel worse around 5-9 pm. My morning "stiffness" is more like stiffness/pain and lasts <30 minutes... just seems more like aging stiffness to me. The evening is different and worse.
Many different manifestations amongst us.
Most docs order at least 20 mg. of prednisone (if not more) for purposes of PMR diagnosis.
It's surprising that you are on only 10 mg. Yes, many kinds of arthritis have morning stiffness,
but being unable to turn over in bed is a symptom frequently suffered by PMR people.
Good luck to you--Barbara
Thanks Barbara for your response. I am going to talk to my Rheumatologist on Monday and I will discuss dosage with him, although I am getting some relief (not complete) from the 10 mg. Your good wishes are much appreciated.
My primary care Doc, in the beginning only prescribed me 10 mg. She did NOT want to give me more... and some think when it's time for you to start reducing the mg's that you can do it faster than you should. (if you do too much it can come back with a vengeance) Your Rhum. Doc will probably up it since your on a very low dose..Good luck!!!
Thank you PMRpro and Barbara for sharing your knowledge and experience with me - never heard of PMR before it happened to me, so I am trying to get my head around both the condition and its' treatment. Finding a lot of variability between and within the PMR community. So how is PMR actually diagnosed - what exactly are the clinical criteria or is it a sort of a diagnosis by exclusion (Rule out everything else it could possibly be - I think I had every lab test known to man). And what, if anything, should I do about the low dose of prednisone I am on? And, by the way, what is a cytokine? Thanks again.
Cytokines are substances made by the body - they are essential to life. Some are inflammatory and in autoimmune disease go wrong and attack the body tissues causing damage and inflammation - which lead to pain and stiffness. You get both in PMR but often it is difficult to say whether it is pain leading to difficult moving or stiffness causing pain when you try to move. Hence a lot of doctors get confused - because they use the words differently from how patients do.
How is it diagnosed? It is a diagnosis of exclusion really - there are certain criteria that should be fulfilled to get the basic PMR assessment. But PMR is not the disease - it is the name given to the set of symptoms caused by some underlying disorder. In the case of the PMR we talk about here it is some form of autoimmune disorder that leads to vasculitis, inflamed blood vessels. There are other diseases that show up with almost identical symptoms and some of them can and should be ruled out - including some cancers.
Once you have excluded all the common ones, you can start on a premise of PMR and try pred - and generally a good response to a moderate dose of pred is felt to be another criterion and box ticked. What is pretty correct is that PMR pain responds to pred, only pred, and other painkillers aren't a lot of use.
This is disputed of course - but so is the fact that ESR/CRP are raised, it isn't in about 20% of patients, or how long PMR lasts. Many doctors insist it lasts 2 years and if it lasts longer it isn't PMR. About a quarter of patients get off pred in a couple of years - but are at a higher risk of a relapse. About half need pred for up to 4 to 6 years and the rest of us for much longer, sometimes for life. This is now beginning to bring up the idea that it isn't just one form but is what is called heterogeneous - comes in different shapes and sizes.
What to do about the low dose? There are people for whom that is enough so it is worth trying it for a few days - but I've already responded asking WHY you taking it as 2 x 5mg. 1x 10mg in the morning might achieve more.
THanks to Dinty123 for asking these questions, and PMRPro replies which have helped me understand a little better. I've had PMR for 6mths. and am slowly tapering down from 15mg now at 9mg.
Hi RDy72 - It's nice to meet another person who is just beginning their PMR journey. Maybe we can learn more about PMR together and help/support each other throughout the process.
I am also new on this journey since diagnosis Oct. 2017,
This is a very old thread - if you want more contacts do post a new one.
PMRprp, I am new to this for him and have had what we think is PMR for four years now without being diagnosed. My question is my pain started in both hips and has gradually expand it to basically every muscle in my body . Exercise and stretching and any type of stress on the muscles just makes the pain much worse especially for the next few days after that. Is this normal for PMR?
Yes - and it still happens even when on pred. The pred manages the symptoms and does nothing about the underlying autoimmune disorder and it is that that makes your muscles intolerant of acute exercise. You can do more - but you have to "train", build up the amount and level of exercise very slowly and in the meantime pace yourself and rest appropriately.
It sounds as if you may have bursitis in the hips - that is typical of PMR although there are doctors who don't know that or dispute it. There are studies that show it is so.
I am taken back by your comment that the prednisone helps the symptoms but actually does nothing for the underlying inflammation. That's A New Concept for me. Can you explain this please? Thanks so much.
Not the inflammation, the CAUSE of the inflammation.
The symptoms we call PMR are the result of an underlying autoimmune disorder which causes your immune system to be unable to recognise your body as "self" so it turns on it and attacks various body tissues as if they were invading bacteria or viruses. This damages cells, causing inflammation which, in turn, leads to swelling and pain. That is what is relieved by the pred - it does nothing about the underlying illness that causes the symptoms, it just manages the symptoms until that underlying illness burns out and goes into remission which it does for 75% of patients in anything from 2 to 6 years. The rest of us take longer and for 5% it remains for life.
Oh my gosh, you are so knowledgeable! I learned more from you in a couple of paragraphs than I did through all my research on PMR. Thank you so much for taking the time to explain all this to me. Although I have a better understanding now of PMR it is all somewhat discouraging. It appears it is a chronic condition and not self-limited as I have read. I can't imagine years dealing with this condition. And that doesn't even take into account how it is treated - with Prednisone and all the side effects and problems that come with Pred , not to mention the difficulties with tapering and the relapses and remissions. It's all a bit disheartening. But I don't want to take up anymore of your time asking novice questions which I am sure you have gone over and explained umpteen times before. But I do have two last questions... I am going to stick with the 10 mg of Pred for a couple of days and see how it works - I have gotten some relief as I said earlier. I talk to my Rheumatologist on Monday and will discuss dosage with him. As to why I am splitting the dose into AM and PM - that's the way my Doctor prescribed it. Why do you say 10 mg all in the AM would achieve more? Here is my second and, I promise, last question ... I am from the U.S. and I realize this is a UK forum -- have you noticed different approaches to PMR management in the US vs UK? Thanks for all your help!
Why is taking all the pred in the morning better? Because it is a bigger dose acting on the inflammation that has been renewed overnight. If that is "erased" effectively you are often able to get moving during the morning and later in the day and that itself often helps the stiffness and pain. And the top international experts recommend it for that reason.
PMR MAY be self-limiting - about a quarter are off pred in a couple of years, about a half take up to 4 to 6 years - so for 75% of us there is an end in sight, even if the light at the end of the tunnels is a bit dim!
There are differences in how it is managed yes - but the new international guidelines that were published in October last year were drawn up by experts from the American College of Rheumatologists and EULAR, the European equivalent of ACR, working together. The differences seem more often to be due to doctors who haven't bothered to read them - and think they know it all. It certainly isn't an official line. I suspect it may be due to the difference in the systems where almost all rheumatologists in the UK and most in Europe work together in hospitals so are more likely to exchange experiences and adopt a local policy. The big medical centres in the US - Mayo or Johns Hopkins for example, seem to be more likely to sing from the same hymn sheet as the Europeans.
Just to give you my experience....I was put on 10 of Pred for PMR and it worked beautifully for me. I never had morning stiffness really, but definitely during the day. I completely understand how you couldn't get out of a chair. I live alone so used to go down on my knees and crawl to something that I could pull myself up on. Getting out of the car after a 30 minute drive required that I have someone with me to stand me up. No pain really at the beginning but after some weeks would be in tears with the shoulder and hip pain while just lying still in bed and turning over became impossible due to pain. It's interesting what PMRpro said about the cytokines affecting how you feel so guess mine were released after I got up because in the morning I was ok.
Good luck Dinty123
Doraloise77 - Thank you so much for your response. It is good to hear that 10 mg of Pred. worked for you - gives me reason to hope that the low dose will work out for me as well. How long have you been on Pred? When you started the 10 mg of Pred did you immediately have complete relief with no residual symptoms? I am starting my 4th day on Pred. today and found I am now able to sleep through the night until about 5 AM without pain, the fatigue is now greatly reduced, but I still have morning and eve stiffness/pain (although with somewhat less intensity than previously). Have you had any side effects from the 10 mg. of Pred? I am very worried about Pred. side effects and am wondering if they will be minimized with the lower dose of Pred. Thanks in advance for all your help.
I had some relief of symptoms after one dose and complete relief after two, able to resume my passion of gardening and brisk walks with my daughter. I was lucky I think as the disease initially was just a little bump in the road. In a year I was down to 6 of Pred, never having had a flare or raise in markers. I forgot I had PMR. On those doses I had no side effects at all.
But.....my luck ran out.....I was diagnosed with GCA a year after the PMR. I am once again down to 10 but it has been/is a rough ride. So always keep in mind the symptoms of GCA. Best of luck
I am also in the U.S. I have read here about different initial treatment plans from doctors from all the different countries. It seems to be more about their own level of knowledge and experience with PMR than what country they live in. Keep asking questions. Knowledge will help you get through this and everyone here is always supportive. It continues to be so helpful for me.
Hi TooSore - Nice to meet another Yankee. It just appears to me that in the U.K., PMR is discussed more than in the states. For example this forum - is there a similar forum in the U.S.? This is just my perception and not based on any real evidence. And I do agree that the treatment you receive is determined by your Doctor's experience, knowledge and expertise. That's why it's nice to have this forum - to sort of fact-check and learn, at the very least, what questions to ask.
There are support groups on Facebook for both PMR and GCA (separate) that I have found very helpful. Members are from all over but a lot are from the US.
Cheers
Believe it or not, I am not an avid Facebook user - so how would I get in touch with these groups. Go to Facebook and search for PMR support groups? Thx
I can send you the links in a message if you like.....hmmmm.... I think though you need to be on Facebook, i.e. have a page....really not sure...I do have a page but never use it except for the support groups.
Cheers
I actually do have a Facebook page - I just never use it. So yes, please, send me the links. Much appreciated.
It's discussed more here because of 5 women who "met" on the original UK PMRGCA forum on a site called patient.info. It was set up originally by 2 doctors for other doctors to be able to access reliable and sound medical information easily. When these ladies met there was already a support group in the east of England and one in Scotland and, at the time, a forum in Canada and a sort of one in the US. I never belonged to the Canadian one but I did use the US one for a short time - but then it was coming up with "corrupted" notices when you tried to log on. There were only a few of us - and the others came and joined us on the UK site. The Canadian one just disappeared and we have no idea what happened.
In the meantime, one of the ladies had set up support groups and a charity in the north of England where she lived - and later they all worked together to set up a national charity, based in London. The NE charity set up their own forum some years ago for the benefit of people who didn't live near a flesh and blood support group - and then this one followed a bit later, it is the most recent one.
There was an attempt to set up forums on your side of the pond but they haven't taken off - everyone seems still to use these 3. There seems to be an element of "critical mass" required to get a group going and then growing - the NE forum had server problems and it nearly died before we could set up another. It went from hundreds of members to about 20, after a few months it is heading for 60 but it is slow growth, just as it was originally. There is also the point that all the "patient experts" are here - and I for one couldn't cope with participating in another!
So at the very least there is more discussion of PMR in the UK than in the US. Although, DoraLouise77 informed me that there are support groups for PMR and GCA on Facebook and perhaps because I don't regularly go on Facebook, I have missed them. And I agree the US and UK have very different healthcare systems and PMR may be less of a system priority in the states than the UK, hence Doctors here pay less attention to it (don't read the guidelines, etc.) What did you mean when you said that all the patient experts are here (in the UK or in this forum?)
Several of us have had PMR or GCA for several years (some are recovered and off pred) and are involved with the charities, support groups, drawing up guidelines, research. So we know a lot about it that is medical/scientifically founded. But because that is all part of the charities - they are mostly in the UK. I'm in Italy but am part of the UK groups. There are 3 different forums, some of us are on all 3.
I know a few people who had bad experiences on the FB page - I've never visited it myself though.
It is very obvious that you and others in this forum are very knowledgeable about PMR just judging from your responses. I have found this forum is a great resource where one can get some clear answers to questions and complete explanations about the PMR process.
Can I ask what kind of 'bad experiences' others have experienced on FB? Thx
I don't know too much about the details - just that one lady posted to put her point of view which didn't 100% concur with the original poster and was given quite an unfriendly response. There was a bit of insistence on using alternative therapies at the time - it was a while back.
These forums are tightly moderated so you won't find any woo - there are posts about using complementary therapies that members of the forum have tried and found useful, not so much for the PMR but for the add-ons. But no-one saying you can cure PMR with diet or some expensive therapy that will fill someone else's bank account!
I just briefly went on the PMR support group on FB and scanned the posts. My initial impression (again based only on a superficial read-through) is that there is not the 'patient expertise' present in FB that there is in this forum. Also , the way the support group is set-up in FaceBook makes it somewhat difficult to follow.
How is this forum tightly moderated?..And what is 'woo'? Thx
"Woo" is used to denote perhaps slightly dodgy claims of the sort "this cures everything" with no back-up proof.
On the UK forums anything that is at all questionable will be caught/reported and monitored closely. The patient.info forum is the strictest because of its background - it was set up by doctors for doctors originally. To remain credible it must be strict. The other two forums are also associated closely with the charities which have top names from mainline medicine as patrons and that also means we must be credible.
Thanks for the definition of 'woo' - never heard that term before. So do physicians review all the posts on this forum in order to find and filter any questionable information - that's really excellent, but seems like an enormous amount of work.
Did you know that this forum is also on FB? (You can also find us on FB facebook.com/pmrgcauk and twitter@PMRGCAuk). Think that's great for the US - but may get confused with the other support groups on FB.
Physicians??? Good lord no! You don't have to be a medic to identify questionable info!
I don't think I'd say "this" forum is on FB - this forum is this forum! I've never looked at the FB one - I have enough on my plate with the 3 I already "do"!
The FB page has little going on, I just looked. The only really active FB pages I've found are those ones which ended up making me cross and depressed, people trying to live without pred and being majorly critical of those of us who actually can't manage to go "all natural".
Having actually done "all natural" for PMR, it is not something I'd recommend to anyone! I "managed" but that is about all I would say - I was constantly in pain and miserable and have no desire to ever go there again!
I hasten to add - it wasn't out of choice!
I just relayed to PMRpro that it seems the PMRGCAuk forum is now on FB (see my reply to her below). If you want to check it out here's the link: facebook.com/pmrgcauk.
I "liked" the page some time ago. It's not particularly active is it? It's not this forum, which is part of HealthUnlocked, it's the PMRGCAuk website which has a link to the FB page. Just another method of outreach.
So who does the monitoring of this forum? You and the other 'patient experts' who participate in the forum? Still, a lot of work!
This is what it says in the welcome to the PMRGCAuk community on HealthUnlocked - (you get this message when you are a new member of PMRGCAuk). "Hi and welcome to the PMRGCAuk community on HealthUnlocked! You can also find us on FB at facebook.com/pmrgcauk and twitter@PMRGCAuk." So, it is not one of the regular FB Forums - but it appears they have put the PMRGCAuk forum on FB. Who would be monitoring the this forum on FaceBook?
No idea Dinty - nobody probably...
PMRGCAuk will have an administrator who keeps an eye on things. It doesn't seem to have much going on regarding sharing health info between patients as we do here, more about sharing info about such things as Dasgupta's talk, or a fundraising tea at the House of Lords!
LOL! HeronNS (below) says they will assign an administrator to monitor it - but I think it will need similar expertise as this forum has to really get it going.
Frankly my experience of PMR and Facebook is not good. I signed up to a couple of sites and found them pretty dismal. This format is MUCH better. On the other hand, maybe PMRGCAuk needs someone like you, Dinty, to lend expertise. 
LOL! Thank you for the kind words, but you are so wrong. I just found out I had PMR this month and I am no expert! I was floundering around (and still am) trying to get my head around this disease and what it means - not really getting very far. Thankfully I found this forum. PMRpro helped me to understand some of what was happening and answered my questions. I am so impressed with this group and its advice and support. Someone like you or PMRpro should go and whip the FB forum into shape - you have the experience, knowledge and expertise. I'm just a beginner and have much to learn.
I should have said the FB page has an administrator. All FB pages have administrators. I'm not sure why you think FB would be more useful than this and the Patient forums? patient.info/forums/discuss...
Facebook, being what it is, would require fulltime monitoring.
No, I don't think FaceBook is doing the forum thing well. But I'm glad they're doing something, even if it's only getting the word out about PMR - 'cause it's important for people to know about it. It took them (the professionals) 3 months of agony to figure out I had PMR - and I know I'm lucky, some people aren't diagnosed for years. But I had never heard about PMR until I had it. We need more public exposure about PMR and autoimmune diseases in general.
I was without a diagnosis, in fact without a suggestion that I had more than osteoarthritis and old age, for over a year. I wouldn't have stumbled over a PMR page on FB without the name of the disease. Where the awareness needs to be raised is actually with the medical profession! PMRGCAuk is volunteer run, was started by patients very like us who got together and formed the organization. ❤
"PMRGCAuk is volunteer run, was started by patients very like us who got together and formed the organization."
As I explained in the very first post at the top of this thread of responses! 
Yes, I understand. I wish we had a similar organization in the US - but not sure there is the patient expertise here to pull it off.
I know our healthcare systems are different, so I'm not sure what a 'charity' is that you refer to. Thx
Wiki says
"Charity may refer to:
- Charity (practice), the practice of being benevolent, giving and sharing
- Charity (virtue), the religious concept of unlimited love and kindness
- Principle of charity, in philosophy and rhetoric
- Charitable organization"
I suppose it is an organisation set up to provide services or assistance that is not provided by the state or the private sector.
Nothing to do with the healthcare system - in this case it is ordinary people who are affected by a disease who get together to form a support network they can use to reach out to others in the same situation. Not for profit, not for financial rewards - just out of the goodness of their hearts.
I am from the US and you are so correct. The medical professionals need to become more aware - I think especially in the US. It was my understanding that the Patient Info forum in the UK was started by Doctors - I can't see that happening in the US. Believe me, I'm not defending the FB forums. The only reason I found out about FB was through this forum (PMRGCAuk), by asking if there were similar discussion/support groups in the US. I still can't understand why we don't have comparable support groups, but it seems FB is all there is in the US, unfortunately. However, I guess it’s something. As I said when this discussion began, I think the UK is doing a much better job (than the US) regarding PMR awareness. Perhaps it is due to our different healthcare systems.
There was an attempt by US/Canadian contributors on the 3 forums to get a forum going but it didn't seem to take off - as I said somewhere else, you need a critical mass for it to work and obviously there were less of you. Plus, without people with the right scientific/medical/patient background and expertise, there may not be anyone who can answer questions accurately - patient experience is one thing, medically related knowledge is another.
As for support groups and charities - you can have that when you have a group of people who get together and set them up. But it isn't easy and it requires a massive commitment of time - and also funding. You have to have someone who knows how that works and who is willing to donate their time in the first place.
There are hundreds of hours of voluntary work behind these forums and support groups - they don't happen on their own.
I can see that these forums take a major commitment and need volunteers who have the requisite medical and scientific expertise. It's unfortunate, but I don't think we have that level of dedication/knowledge on this side of the pond. What can I say - we have Obamacare.
These UK charities existed long before Obamacare - so that isn't entirely to blame!!
Dinty, I still get updates from the USA group, although I left it. I see they have a great many more members now, so perhaps it's finally taking off? For me there's not much point signing up again as differences in the medical systems between USA and Canada are even greater than between UK and Canada!
groups.yahoo.com/neo/groups...
Thanks so much for the info - I will certainly sign up and see what it offers (although I really like this forum). However, since I am newly diagnosed, I presume I have a long journey ahead with PMR and should therefore explore all resources available. I really do appreciate all your help and support.
: ) Dinty
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