My GP thinks I may have PMR but she wants me to see a rheumatologist before starting treatment. I asked her if I should continue taking Ibuprofen and/or paracetamol tablets and she said yes, if they have helped, then continue taking them for the time-being.
The hospital letter arrived this weekend and it gives me a date for rheumatology in November! November! My optimism levels fell through the floor when I read that. November seems so far away.
My aches started in May ... so I am wondering ... is it OK to keep taking Ibuprofen tablets for six months? What pain-killers did you guys use before diagnosis? I will ask my pharmacist about this but I would also be very grateful to hear the views of others; my pharmacist can talk the talk but you guys have walked the walk.
What about using Voltarol gel instead of Ibuprofen tablets? Might that help?
My journey of pain started May 2016 with sudden onset PMR. It took one month to get a diagnosis and in that month the painkillers started with things liked Tylenol, moved on to Naproxen, then Tylenol 3 with Codeine. None of them began to touch the pain. Then I got Percocet (Oxycodon) and that did the trick. Once on the pred, that eases the pain. I understand that NSAIDS are not to be used with Prednisone so I still use the Percocet occasionally for non-PMR problems.
Until recently, I've tended to avoid painkillers so this is all very new to me and Percocet is one painkiller I have never even heard of! This is a journey of discovery and I will store-up this information. Thanks.
To be honest, I wouldn't say I was in "pain" … I think I would more describe it as severe aches and stiffness. Maybe I should ask the pharmacist for ache-killers
Percocet is oxycodone and paracetamol. Before diagnosis I was not just in pain I was in excruciating pain. In the end even getting dressed was virtually impossible. If my nose itched I left it as it was so painful to lift my arm up. In bed I had to stay totally still as any movement caused pain. You may be right and you do not have PMR, here’s hoping.
If those painkillers are at all effective, not just taking the slightest edge off, then PMR diagnosis is questionable. Both ibuprofen and acetaminophen (paracetamol) have serious side effects of their own if taken for very long, particularly if you're taking them at or close to the maximum suggested. I did not take painkillers for what turned out to be PMR pain as I thought it was osteoarthritis getting much worse and NSAIDs including aspirin are contraindicated for OA (interfere with cartilage regeneration). I was not diagnosed for over a year.
I could see this in my GP's eyes; I could tell she was dubious about the usefulness of ibuprofen and paracetamol. I am taking a very low dose each day and I think it takes the edge off.
It's been a long wait to hear from the hospital's rheumatology department. Each day I would return from work, hoping to find a letter from the hospital and the letter would not be there and I would be close to tears.
Yes. But unlike for many (most?) it had built up gradually. First I had trouble getting up from a seated position if I'd been inactive for just a few minutes. I was still working at the time and this involved my getting up and sitting down very frequently. Later I remember an evening I was trying to get up off the floor after doing my yoga and physio exercises (yes, still doing those!) and it took me half an hour to get up. The doctor kept prescribing Celebrex, which I wouldn't take because I thought it shouldn't even be on the market. If I took aspirin for a headache all the other pains would feel slightly better as well, but never went away completely. I finally got a different doctor, with some difficulty, when I discovered I had lost a lot of weight. So all in all that adventure lasted about fourteen months. The miracle of pred occurred within a couple of days, with initial slight alleviation of symptoms within hours!
Oddly enough all winter, when I had to plan how to get out of bed, I was able to shovel snow with no problems. That still puzzles me.
Oh dear CycleCommuter, that really isn’t good enough. Either she arranges for your bloods to be taken now or she puts you on 15-20 mgs of Prednisalone. Please see a more competent doctor.
In my experience painkillers of any kind were of little use. Prednisalone works very quickly, it is the usual diagnostic test. You cannot suffer this pain for 6 months.
The GP may be wanting to avoid the problem encountered when rheumatologists find the diagnosis a but uncertain and taking pred has muddied the waters. I know it's tough to stay in pain for so long when relief should be offered more quickly. But many of us have struggled on for much longer than three or six months and lived to tell the tale. I think trying to get an earlier appointment with the specialist would make a lot of sense, though. When someone is in obvious distress and with a tentative diagnosis already, being forced to wait for up to three months to be seen is unconscionable.
To be fair on my GP, she saw me pretty quickly and she arranged for two sets of blood tests and saw me again, plus followed up with a phone call. The delay I think is with the hospital's presumably overworked rheumatology department?
The GP says the case is "atypical" … something about CRP elevated, ESR normal, age and gender unusual so she wants a rheumatologist to take a look before trying prednisolone. Deep-down, I appreciate having a careful GP.
Well obviously see how you go. Nobody initially, wants to be on steroids. You aren’t 28 are you? Like our youngest yet PMR sufferer, here.Anything over 50 is fairly typical getting more usual as the years go on. We have male contributors here but a higher percentage of women have the diagnosis. Perhaps she has concerns about Rhematoid Arthritis? I only know from my own experience that my walk had become a hobbling shuffle and I couldn’t even get out of a deep chair unaided. Do press for a sooner appointment.
1 in 3 patients with PMR is male so hardly unusual even if more are women (making assumptions here) CRP is sometimes elevated but not the ESR - she needs to do more reading!
If NSAIDs help that IS unusual in PMR. Is it safe? Difficult to say - I know one lady who was told to take ibuprofen for PMR and after 3 doses (doses not days) she was in A&E with a gastric bleed.
Age - can't comment as I don't know how old you are - but over 50 is perfectly usual and since PMR doesn't listen to the doctor's theory it CAN and does appear in younger patients.
However - a young woman on the forum just a week or two ago has GCA at the age of 28 - everything is possible.
In this pre-diagnosis stage, I need to take something because I have to get some sleep and I need to go to work. Ibuprofen helps me a little with this; I still need to stand up carefully and to walk slowly, and I still can't pick things up off the floor, but the legs do seem to move a little more freely than they would without taking any Ibuprofen. If I stop the Ibuprofen, it starts to feel worse within 24 hours. It's far from perfect but it seems to take the edge off the discomfort, unless of course it is placebo effect
I keep to a very low dose of Ibuprofen (200mg twice a day) and I always take it straight after a meal on a full stomach - never on an empty stomach.
Oh my goodness! I was in so much pain prior to diagnosis but just for 10 days or so. Was fortunate to see my GP he prescribed prednisone immediately. Tylenol and nsaids did nothing for PMR pain as I was taking them for the 10 days. No relief. Voltaren wont do it as this is PMR, if diagnosed correctly that is.
Misery .
Labs?? Results?? Why can’t she order these for a diagnosis at least. Most GP know this.. what would happen if you went to ER and requested these labs based on GP recommendations. I know on the US if you are in enough pain they most likely would check In flammatory markers and go from there. Good luck my friend!
I have had the blood tests but results are "atypical". Did you try Voltarol? I am thinking about trying it … but with both upper arms and both upper legs aching, I probably will need a bathtub full of Voltarol!
Many labs are atypical . Like others have noted.... They prescribe a trial of prednisone anyway based on symptoms... If it works.. it is PMR. If not.. more diagnostics are needed and you discontinue prednisone.
I am going easy ... I'm pedaling slowly on the flat bits, rolling with the flow downhills and, during those uphill parts of life, getting off and walking
Basically steroids are the only thing to really help the pain. If other things work you can probably assume you do not have PMR. I was in such pain I paid to see a rheumatologist privately as my GP kept saying I had a virus. Your GP could do a test of say 15mg of steroids for a week and see if it works.
Maybe I am in denial … I often find myself hoping that this is a virus … and hoping this will just go away. Some part of me might even be a little glad to wait until November; glad because then this awful aching will have time to perhaps go away by itself, without the need for steroids.
Before I was diagnosed I don’t think I would have been able to wait until November. I would have been on a one way ticket to Switzerland! Do things like Ibuprofen work on the pain? If so you can possibly discount PMR. If you can get your GP to give you steroids just for a week and see if they work it would really pay off. You can stop them immediately if they don’t work. If it is PMR by leaving it you are more likely to get PMR’s sister illness GCA which can cause permanent blindness if not caught in time.
Hi Cycle commuter. Like your GP my GP wanted me to see Rheumy before starting pred, since the pred reduces symptoms and blood results if it is indeed PMR. However GP did presribe 30mgs of pred for if I couldn't handle the wait, despite my blood results being normal at the time. My time scales waiting for NHS appointments were very similar to yours.
Since I could not bend, get in or out of bed, seized up every time I sat down, the walked like a new born fawn when I did get up I thought I was slowly becoming paralysed so, scared out of my wits and in significant pain, I arranged a private Rheumy appointment at a private hospital close to my local NHS hospital. I have no private medical insurance so when I rang the private hospital I asked if there was a Rheumy I could see who also worked for NHS. My GP had given me copies of all tests results to take with me.
It was the best £200 I have ever spent. I saw Rheumy within two days on a Saturday. He suspected PMR, told me GP had over prescribed at 30mgs and gave me a prescription for 15mgs saying if I had 'miracle' at 15mgs it would confirm diagnosis of PMR. He asked me to refrain taking pred until I had another blood test the next working day on the Monday, which he arranged so that I did not have to queue but could go straight in. He even rang me at home at 9am on the Monday to check I had understood and remebered his instructions.
As soon as I had blood test I took first 15mgs and 24hours later was almost functioning normally. He asked me to ring him on the Friday to check in with him.
Since this time I have been seeing him under NHS, but as I say this initial consultation was worth every penny even if you have to beg, borrow or steal to afford it! It saved me four months of pain and worsening symptoms.
If you can't go to private Rheumy and you have not yet had blood tests via your GP for ESR and CRP levels, request the blood test. This may indicate high levels of imflamation necessitating taking pred before November which your GP can prescribe.
It was against my beliefs too but fear drove me to it when neck started to swell causing what felt like constriction in the throat. However completely understand and respect where you are coming from.
I was diagnosed in May with pmr but it has been a messy process because I have other back and muscle issues going on. I take pain killers for the 'other' bits and have found, like others have said, only prednisone deals to the pmr pain; I steer clear from anti-inflammatory pills because of clashes and subsequent digestive issues. Sometimes I feel like I'm a walking onion (about the right shape having put on so much weight) in that I have different layers of pain so taking pills is a little bit trial and error. Good luck in finding your own recipe, hope it's not onion soup too 😎
In extremis, Tramadol will take the edge off, or at least make you care less. Personally I prefer to take my chances with what the body produces naturally ie Prednisalone.
Did you find Tramadol worked for PMR, it did not make a blind bit of difference for me? It does help fantastically for other things though. I find the odd drink makes me care less and is tastier than pain killers!
Thank goodness it still works for me. I tend not to drink alone so it is great when people drop in and say they would like a drink rather than a cup of tea or coffee!
Just recently a rheumy in one trust died in an accident - and one hospital in the north of England now has no rheumatologists as they all retired or left. Cancellations these days are the order of the day as doctors give up the unequal struggle and move or become ill due to the stress. And there is a worldwide shortage of rheumies so locams are difficult to find.
I also have a thing against private - but if I had my time over I'd have looked for one. I saw a rheumy early on on the NHS, a colleague of my husband, she was rude and insisted I had osteoarthritis, she "could feel it", 14 years on I still occasionally get knee pain due to flaring PMR but an x-ray recently showed nothing at all. It cured the knee pain though!!! In the end it was 5 years before I diagnosed what I had myself. And met another unhelpful pheumy who wanted it to be anything but PMR - despite a miraculous response to 15mg pred in under 4 hours.
All good advice above from everyone. The only extra comments I can make would be dietary. If you have PMR, it's an autoimmune inflammatory illness. There is a growing body of evidence pointing towards gluten and leaky gut syndrome being involved in autoimmune disease. I have always been sceptical about such things but my personal experience with GCA/PMR has changed my opinion. After diagnosis I slashed inflammatory foods and white flour from my diet and ate loads of oily fish and took omega 3 fatty acid supplements. For me, my bloods reflect my symptoms. To start in Nov 2017 my esr was 115 and crp 185!! I was in agony. Within 2 months esr was 12 and crp undetectable. Yes I was started on 30mg Pred but tapered quickly. Today I'm on 7mg and esr is 5 and crp still undetectable. I feel better than I have done for years. Am I one of the lucky ones or have my dietary changes helped? I don't know, but I can tell you that if I binge on pizza, pasta or crusty white bread I don't feel very well afterwards, so perhaps I have a slight intolerance to gluten - I'm not coeliac.
So try and get esr and crp bloods done now. They will give a good benchmark.
Take what ever pain killer gives relief. Good luck.
Interesting. I don't know much about diet and foodstuffs and your suggestion sounds complicated. Where do I start? How can one tell which foods are "inflammatory" and which are "anti-inflammatory". Does it vary from person to person? Can a food be "inflammatory" for one person but "anti-inflammatory" for another person? This is all so complicated.
I am not aware of having any allergies or intolerances. All I do at the moment is try to have a good, balanced diet - variety of colours, etc.
My biggest vice might be drinking quite a bit of coffee. What do you think about coffee? To be honest though, giving up coffee when I am also feeling so very achy would be difficult. When I am achy, I need a bit of normality and a bit of comfort-drink!
Inflammatory foods are considered to be refined carbs, nightshades (tomatoes, aubergines, bell-peppers etc), red meats If you do an internet search there is loads of information out there. What I have learned is you don't have to be allergic or markedly sensitive for the body to become sensitised. I agree we are all different but what we have in common is we have an auto-immune disease characterized by uncontrolled elevation of Interleukin-6. I have written a lot about this recently. To get well we have to try and work out what has caused this change within us. After 60 years or so our immune systems don't decide one day "Hey I think I'm going to make my body sick". Often the inflammation will have been rumbling around our systems for years, largely ignored and un-noticed, only to explode in response to a major stressful episode in our lives or a really bad viral infection. Sound familiar? Taking the steroids doesn't cure the disease it just dampens the inflammatory response so our symptoms become bearable. I never went on an exclusion diet, some have and we have a member who is doing really well as a result. I thought long and hard about what I'd been doing to myself for the past 60 years and realised my diet was not as good as I thought and I was far too stressed (work, family, 21st century etc). I changed my mind set, and worked on healing myself by taking responsibility and accepting I was not invincible afterall !! For me, the lessons learned and improvements in my health have been dramatic and positive so I carry on, because I'm not returning to the painful days.
Dear CycleCommuter, please listen to all the good advice on here. It comes from people who have been through it all with PMR/pred - denial, anger, grief. This is a battle you can only win with calm, gritty acceptance, but you will come out the other side.
Prior to diagnosis, Voltarol made me feel a whole lot worse...
Hi CycleCommuter, I'll add to the heaps of advice and experience with my own. I had PMR for 2 years without treatment. Initial bloods were all normal; only identified a B12 deficiency. That can cause fatigue and muscle pain so took GP prescribed supplement for 3 months then waited another 3 moths to see if symptoms improved once B12 was normal. They didn't. They got progressively worse so referral was made and had to wait 9 months.
PMR diagnosed early July. ESR and Crp normal, along with everything else, but had reached the PMR shuffle point, oohing and sighing every time I moved...you'll know the picture. Couldn't bathe, that is take a bath as I could neither get down or up in the bath, so had to shower. And the warmth of the shower was the only slight relief from pain. And it only lasted as long as in the shower. I tried paracetomol, ibuprofen, another NSAID beginning with T and cocodamol. None worked at all and the latter, being opiate based made me physically sick, nauseous and dizzy. Tramadol was offered but that's even stronger than cocodamol, so I declined. Tried the gels, voltarol and ibuprofen, also tiger balm, pepper gel ( capsaicin, I think) nd flexible. None made any difference other than making me sticky and disgusting.
Saw the rheumy and he said he'd see response to a short dose of pred. Took 15mg and within 3 hours, I was a different person. No pain, freedom of movement, could stand, sit unaided, walk up steps...and now I'm on the longer course to control the symptoms. It's not easy and I had many reservations; but I've accepted that it is what it is. If something else helped with the pain, I don't think many of us would choose Pred. I hope this helps. It's such a difficult disease to understand and even more difficult to accept but this forum is packed with outstanding support and advice. Good luck.
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Two years, what a long time. I'm disappointed to miss out on this year's summer but to miss out on two whole years … you must have felt doubly-bereaved; loss of health and loss of time. I hope you are OK, AS50.
Once you got onto Pred, did you feel 100% better, like your younger self, or was it more that because you were so used to being poorly for two years, an improvements of say 50% felt like an improvement of 100%?
Since you mention "the long course to control the symptoms", I presume Pred does not completely control the symptoms. What would you say, 50% symptom-control? More? Less?
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I'm 68. After 1 dose of pred, within 3 hours I was a different woman! It took 50 years off me. Honestly, and I had no expectation as I knew nothing about PMR or steroids. The difference within 12 hours was life changing. 100% improvement and the horror of the previous 2 years vanished. I've always been fit and active and I felt like I could tackle anything. What I didn't take into account was the stamina and fitness list will take a while to rebuild...and only very slowly. The pred takes the pain away, the disease is still there.
I thought it would be a few weeks of treatment and back to normal, but it doesn't work like that. Started on 15mg, then down to 12.5 after 2 weeks, then current 10 and due to reduce to 7.5 next week. Wisdom/experience here suggests that tapering may be too fast. Currently it's around 80%+ control. That's great, not quite as good as the first few days, but so much better than it has been. I'm getting some discomfort particularly if I do too much and this week, the fatigue is borderline unmanageable. Suspect body is adjusting to adrenals shutting down and I'm hoping/expecting improvement in energy soon.
Hand on heart, there's no way I could go back to the pain. It's already robbed me of too much. I don't like medication, rarely went to GP but, for me, pred is life changing and offers outstanding symptom control.
You'll be bombarded with info and choice, but I'm almost back to the bouncing person I was. And pred did it! Hope that helps.
At the time I was diagnosed I was taking Volterol, Gabapentin, Co-proxamol and Amitriptaline. None of these really helped the PMR pain.
I now take prednisolone and only amitriptaline of the previous regimen. However I do have other problems that cause pain so i take paracetamol and CBD for that.
Six months seems a long time to suffer without prednisolone if you have pmr!
Nothing really helped my pain but Pred. I was lucky. It took a week to get a diagnosis. In two weeks I was in on 20 mg of Pred.. I delayed the second week because I was afraid of Pred. I was diagnosed in Dec. 2016. I am now at 5mgs. Feeling pretty normal. Some residue of pain in my right shoulder that I think is from the initial inflammation. That's where it started first a month before the classic symmetrical symptoms in both shoulders and groin (hips), and fever, and very high ESR and CRP.
Sorry to hear that you will have to wait till Nov. Unconscionable. Please ask to see another GP. A GP should be equipped to start a trial of Prednisone. If it works you have your diagnosis.
Why does the GP think it is a good idea to delay the start of treatment? Uncontrolled inflammation is not a benefit. Ibuprofen may alleviate a bit of the pain, but at least Pred will reduce the inflammation, even if it doesn't cure the underlying condition.
Many thanks to everyone for all your comments, suggestions and encouragement. Today, spurred-on by your combined input, I contacted my hospital’s rheumatology department, to ask them if they thought I should contact my GP to ask her for a short trial of Prednisolone. The rheumatology department are going to bring my appointment forward! No new date from them as yet, but it sounded encouraging. Thanks again.
Yes Hindags I will, although by the time I get a diagnosis, I expect that this post will be lost in the mists of time.
For the time being, until I get a prescription, I am continuing to take over-the-counter Ibuprofen tablets because these seem to help a little. 200mg twice a day, taken after a meal, on a full stomach. Never taken on an empty stomach.
I have found this thread very interesting as I to am awaiting diagnosis. My GP has told me to take regular ibuprofen (taking 400mg morning and night with food) and am also taking 20mg omeprazole same time to protect gut, until we confirm diagnosis. Am also atypical due to being under 50 and ESR only slightly raised. Also on a learning journey and feeling so frustrated by my body.
Hi Female45, as PMRPro asks, does Ibuprofen help? If it does it is probably not PMR. Can you ask your doctor to give you steroids for a week say 15mg just to see if they work? You can always stop immediately if you don’t have the magical effect fairly quickly.
I've been googling and this is what I've found out so far:
Ibuprofen is a nonsteroidal anti-inflammatory drug (NSAID) and Prednisolone is a glucocorticoid drug (GC)
NSAID’S are briefly considered in the 2015 Recommendations for the Management of Polymyalgia Rheumatica and these guidelines are available here: rheumatology.org/Portals/0/...
On page 2574 of these guidelines, Recommendation 1 makes the following statement about NSAIDs: "The group recommends strongly against the use of NSAIDs compared to GCs in the treatment of PMR since the relative harm of long-term NSAID use (as mainly indicated by external evidence) outweighs the possible small benefits in PMR. No specific recommendation can be made for analgesics. On a basis of consensus, the panel recognized that the short-term use of NSAIDs and/or analgesics may be necessary in the setting of pain related to conditions other than PMR."
When I next have a moment I might look at some of the supporting material for these 2015 recommendations. The three sets of supporting material are in the form of word documents and you can find them here:
In case it's of any help to others, here's a quick update on my progress so far:
The hospital brought my appointment forward, as promised and I've now seen a rheumatologist. The rheumatologist's immediate thought was that my symptoms and presentation were indicative of spondyloarthritis rather than PMR, although he is keeping PMR in-mind. Apparently some forms of spondyloarthritis can produce symptoms similar to those of PMR. Before making a diagnosis, he wants me to have further blood tests, plus a couple of X-rays and an MRI scan
Hi Constance, are you being looked after? I hope you are OK.
I'm in the UK so it's the NHS looking after me and, yes I think I'm being well looked after. It's been four months so far for me, four months of aches, stiffness and partial-disability, while trying to hold down a job and still, today, no firm diagnosis and no definitive treatment. Not everyone would consider this a good standard of care but, at the moment, I am trying to remain positive. If the diagnosis was rushed, I might be wondering if the treatment was appropriate, or if this rotten disease might have gone away all by itself. As it is, I am still waiting. Am I fooling myself? Would treatment have been quicker and better in mainland Europe, or USA, or Japan?
Given my PMR wasn't recognised in the UK after 5 years of repeated presentation to GPs and seeing 2 rheumatologists I'd say mainland Europe might manage to win out. One UK rheumy insisted it was OA some 13 years ago (and was rude to the wife of a colleague) whereas a recent x-ray showed nothing of the sort. The other wanted it to be anything but PMR despite a near textbook presentation (no raised blood markers though) and response in 6 hours to 15mg pred. I don't have to fight for everything here, we discuss things. It is rather pleasant.
I'm not afraid of pred and I doubt any rheumatologist is afraid of it either. I think PMR can be a condition that may eventually go away and pred can make things so much easier during that waiting. In contrast, other conditions, such as spondyloarthritis are one-way streets. With one-way-street diseases, clinicians will, I suspect be concerned about possibly missing them and thereby missing the opportunity to use interventions that slow disease progression. Hence the clinical reluctance to jump too quickly to a diagnosis of PMR ?
"I doubt any rheumatologist is afraid of it either"
Sorry - don't agree with you at all there.
I have heard hundreds, probably thousands, of stories about PMR journeys. People have been told by rheumies that pred "will kill them" which is utter tosh. If there were an affordable biologic for PMR it would be used - and the potential side effects of biologics make pred at PMR doses quite a pussy-cat. I'm not saying pred is a sweetie that you can take every day without payback ever - but after 9 years of pred I have no problems due to pred. But the pred does a good job or managing PMR-related problems that would leave me housebound, unable to walk any where or drive. I'm lucky - my GP and rheumy aren't afraid of pred but I know plenty of people whose doctors are.
A quick update: I saw my rheumatologist for the second time and he had the results of the tests he wanted. It's PMR.
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