I was diagnosed with PMR 3 years ago at age of 51 and reckon I had it for a year before that. Just been to see a rheumatologist as have been on Pred 3 years and have tried several times over last 18 months to get below 5mg, without success. Each time I tried a very slow tapering approach to get below 5 mg as people have advocated on here and it still didn't work. After last attempt to go to 4.5 which resulted in symptoms returning with a vengeance I went back up to 7.5 and it stabilised again. Fed up of this yo-yoing I wanted specialist advice, which my GP readily agreed to as he was stumped. To my shock the rheumy says it can't possibly be PMR because I'm too young. Symptoms seem/seemed like PMR, responded to Pred, so GP convinced it was/is PMR. Rheumy says it must be fibromyalgia, but surely then I wouldn't have responded to Pred? And symptoms were classic, unbearably stiff and painful shoulders and hips in particular. So now what? Who is right? Should I seek a second opinion? I guess he is the expert, but I'd like to know if you can get PMR in your 50s. I'm at the stage where I don't care whether it is PMR or not I just want to get off steroids.
Anyone else on here got PMR in their 50s? - PMRGCAuk
Anyone else on here got PMR in their 50s?
I have had the same argument from several rheumys. I developed symptoms at 46, classic symptoms and after 14 month of excruciating pain they tried steroids and found I was pain free 4 hrs later. 3 months after this developed classic GCA symptoms and spent 2 years with the same argument. I ended up seeing 2 of the countries top Drs for Pmr/ GCA. and have been diagnosed with both. My local rheumy refuses to listen to their advice so I now travel 300 miles to remain under the care of an expert. You are not too young, some of the people here may be able to recommend a good rheumy. Good luck, rubric x
Any rheumatologist who says that "it can't possibly be PMR" because you're too young at 51 is not worth you visiting for a second time, except to educate him with the fact that it isn't unheard of for people to be diagnosed in their late 40's. Although the average age of onset is 70, there are many people being diagnosed in their 50's, and we are hearing of ever more younger people.
You are quite right in that if you had Fibromyalgia, you would not have responded so well to the steroid treatment. And your symptoms do sound like those of classic PMR. Among the treatment for Fibromyalgia is analgesic painkillers which don't work for PMR.
It is possible to have both PMR and Fibromyalgia, but the possible reason for you continually being unable to reduce below 5mg without returning symptoms, in spite of following the slow tapering routine we often advise here, could be that your adrenal glands are not back up to speed in producing their supply of cortisol (natural steroid) which has been suppressed by the artificial steroids. This process usually starts from around the 7.5mg dose. A Synacthen test can be carried out to check on whether your adrenal glands are kicking back in with this natural production or whether there is a deficiency.
So yes do ask for a second opinion. Whereabouts in the country are you - you might be in an area where we can recommend someone.
Thank you that's very helpful and your opening statement confirms my thoughts. I was shocked and appalled by his whole attitude and dismissive manner. I'm in Leeds and went to Chapel Allerton Hospital for the consultation, but I'm willing to travel anywhere eg York, Harrogate if there is somebody good out there. Can I ask my GP about the Synacthen test or is that something I need to ask another rheumy about?
You are in the right place get a referral to Dr Sarah Mackie, medhealth.leeds.ac.uk/profi...
Follow the link and you will see the Sarah is doing research into both PMR and GCA and has been for well over 8 years that I know.
Below is a copy of the info from PMR&GCAuk Research Section.
Dr Sarah Mackie at the University of Leeds is carrying out several interlinked research studies into PMR, GCA and the various side-effects of steroids. She is very keen to engage with patients, relatives, carers and the public at every stage of the research process, from initial identification of research priorities to final dissemination of research findings. For information on her current research please visit her webpage. Please note she cannot provide individual medical advice to patients, unless they are already under her direct care as a doctor.
Thanks, I followed the link and it says she works at 3 local hospitals including the same hospital I went to - wish I'd seen her and not the doctor I did. I wonder if they talk to each other?
I would suspect yes, but that would make no difference to Sarah. I am quite confident about that. Ask for a referral away from Chapel Allerton
tangocharlie, I'm sure runrig who replied to your earlier post won't mind me mentioning that the expert she "travels 300 miles to see" is one and the same that sambucca has referred to in Leeds, Sarah Mackie - so you are ideally placed for a 2nd opinion with a rheumy who is involved in research into PMR/GCA and who comes highly recommended.
Among some of the best advice that we can offer is a slowly slowly approach with reducing steroids. Oh yes I do so understand how much everyone wants to "get off steroids" but they are the only tried and tested treatment that controls the inflammation of PMR. They do not cure it - they just control that inflammation whilst PMR runs its course (and that can take anything from two years upwards), and protect you from other possible 'nasties' caused by uncontrolled inflammation coursing through your body.
Good luck with getting that 2nd opinion and do come back and let us know how you get on.
Thanks, this could be tricky as both doctors seem to work at the same place. :/ I'll ask my GP what to do. I definitely don't want to see him again and presumably I have a choice.
You most definitely have a choice. And it doesn't matter at all that you've already seen a different rheumy at the same hospital. It's your body and your choice. I have done the same in the past for a different medical condition.
Hello tangocharlie, I developed PMR aged 52. It came on over night and within 3 months I couldn't walk, sit, stand, sleep, well need I continue, you've all been there! I was diagnosed by a rheumatologist as my GP "couldn't for the life of her know what was wrong with me". By the time I was diagnosed I was in so much pain that I couldn't sleep and all I did was cry. I really thought I might be dying. Within 4 hours of taking my very first pred dose I was almost back to my normal self. I again cried so much because it was then that I knew I wasn't going to die and there was hope for me.
I have been on preds for 4 months shy of 2 years. I've had one flare, pre last Christmas, reducing from 9to 8mgs. now I'm attempting a reduction from 8to 7.5 Into the second week of the dead slow and almost stop reduction. Keeping my fingers crossed.
As has already been stated, preds do not touch fibromyalgia and I understand your frustration and despair when a so called expert tells you you haven't got a condition that displays all the symptoms and reacts textbook wise to the established treatment. Have you been back to your GP to see what his reaction is to this consultants comments and also if the consultant says it's not PMR what does he think it is?
I understand your frustration and disappointment with this condition. We all feel like that, but please don't be too eager to get off the preds. 3 years with PMR is not abnormal infact it's very much the norm, and it would be madness to get this far only to spoil things by decreasing too quickly. You are in sight of the finishing line so stop worrying about how long it takes you to cross it. In the words of a wise sage, PMR came when it wanted and it'll go when it wants. All the best, tina
Thanks for your wise words. You're right about the Preds but I get so frustrated. I put on nearly 2 stone within a month or so of starting on preds which will not shift and which puts me the very obese category at 16 st. I sleep badly, it takes me ages to gt to sleep and get leg cramps most nights which wake me up. The consultant who says I 'can't possibly have PMR because I'm too young' also says therefore I shouldn't be on steroids! I tried to ask if what happens when I reduce the dose is the PMR coming back or because my body is reacting to the withdrawal of steroids and he dismissed this saying he'd see me again in 3 months. I really don't want to go back to him.
Then bloody well don't go back!!! The rheumatologist sounds like someone who I don't think I could get on with. Thank good my rheumatologist is brilliant.
As for the weight gain. Pre PMR diagnosis I was 2 stone over weight and then put on another 1 stone. Friends say that I don't look that big but for me that's not the point. I was 9.5 stone so to go up to 12.5-13 stone was a big deal for me. I started a sort of low carb diet. Only carbs once a day so if I have a sandwich at lunchtime then no potatoes, rice or pasta for evening meal and vice versa. I have reduced my portions only by a little and I try not to eat Inbetween meals. I am losing weight albeit slowly, but I think that's ok. Maybe you could try a sort of low carb diet too. Also, my husband weighs 16stone is about 6foot and his Dr doesn't think he's obese!
As for the leg cramps, you could try taking magnesium supplements daily, just the RDA, that might help.
Your rheumatologists reply to see him in 3 months time without clarifying a care pathway for you, especially as he considers you to not have PMR is a disgrace. I would be tempted to visit my GP and tell them that I have no confidence in the rheumatologist.
As I said in my first reply, I think you' re doing ok. Many patients have this condition for years longer than 3 years. and some forever. And 5mgs has often been a sticking point for many. Hang on in there, don't be tempted to rush the last furlong. Stay at your maintenance dose for as long as you feel comfortable then attempt to reduce by .5 using the dead slow and almost stop method. This rheumatologist has knocked your confidence for six, know that you are not alone, pick yourself up, dust yourself off and start all over again. all the best, tina
Thanks again. I am trying low carbs at night/low GI lifestyle generally but no effect. I tried to join a weightwatchers-type group but they said there was no point if I was on steroids, I'd be wasting my money! I was on the maintenance dose of 5mgs for nearly 2 years before trying to reduce. I'm trying to find out when is the right time to try and reduce further, how do you know? I asked for a blood test a the hospital but don't have the result yet, presume my GP will have it when I go there in a few weeks.
Yes, tangocharlie, when to reduce? I do sympathise with you there. In an ideal world there would be a test that tells us what dose of preds we need at any given time. But, and I know you want to get off of preds ASAP, 5mgs is a relatively low dose of preds to be taking and I understand that patients will suffer minimum side effects. so, just hang on in there, don't rush and undo all the good work achieved thus far. Regards, tina
I'm back up to 7.5 at the moment and will reduce very slowly, tapering very gradually, 0.5 at a time until I get back to 5, by which time I will have seen a new rheumy, ideally the Dr Mackie so many have recommended. Thanks again for help and advice.
I had my first attack when I was about 51. I had it for 4 years before the pain got so bad that I had to give in and see the doctor. Like many before me I had assumed it was the onset of age related aches and pains, because I was already disabled due to spinal injury and arthritis. I couldn't believe the difference taking the pred made. It was such a relief to have my aches and pains under control after so long. As with others I would say don't go back to one who poo-poos the idea
Celtic says (Any rheumatologist who says that "it can't possibly be PMR" because you're too young at 51 is not worth you visiting for a second time)
This is probably the best advice I have seen on this forum. The youngest case of PMR was a male of 27 took them ages to diagnose it because of rheumatologist like the one you have he ended up in a wheelchair before the penny finally dropped. People that blind to symptoms don't deserve to be paid, end of rant. Keep reducing the steroids as your body allows not want so called experts tell you do. Remember 99.9% of the so called experts have never had PMR so don't know what it feels like.
You can tell your Rheumy that when the new international guidelines on Diagnosis and Treatment due to be issued in the near future from the British Society of Rheumatologists, s/he is going to be surprised. The figures have been lowered to include 50 onwards. This was taken onboard because of input from patient representatives.
You can also email pmrgcafightersne@googlemail.com for two reduction plans worked out by patients for patients, put in the Heading Reduction plans. They are free of charge.
There is also a booklet called 'Living with PMR & GCA' availablel from the PMR&GCAuk North East Support written by patients for patients all proceeds go to the charity.
A book by Kate Gilbert as available from PMR&GCAuk.
I've got Kate's book and went armed with it to the hospital have genned up to ask questions. I waved it when I said the book says you can get it in your 50s but he still dismissed me.
Sent you a PM.
I too was 57 when diagnosed but had symptoms and elevated blood tests for five years before this. I blamed statins, my G.P. was puzzled as before the final flare it was atypical and sort of resolved itself. I was eventually beyond stiffness , my muscles were sore to touch and I had pains in my hands and was unable to grip.
Fast forward I am now on Methiotrexate and prednisilone.
I did badly on the steroids initially, 15 mg did little for me 20mg gave me nightmares and very odd moods so my rheumatologist advised that I take Methiotrexate which has caused me fewer problems than prednisilone. The reductions of prednisilone are painful and I find standing or walking for a long time painful and my back feels like a board.
I have heard that early onset PMR is harder to treat and predict and can run for longer but I don't know if it has ever been researched.
I am sort you are having such a bad time tango Charlie , I know when you are in pain and are due to see a Doctor you build up your hopes it will be relieved. If I have learnt one thing over the years it is to put up with less, change Doctors, ask for blood tests and not to feel guilty for being ill.
Also the more informed you are the better.
Good luck.
Thanks. It's bad enough being ill without having to battle with doctors, but I've learned from this and another unrelated medical problem I've had that it is sadly often necessary. You're right about being armed with information which is why I turned to this forum and I'm very grateful for all the great advice I'm getting.
Hi, rheumy is wrong to say that, it does anger me! I am 49, was diagnosed with GCA in January and I do think I have got PMR or something like it too. I get stiff shoulders, achy legs, crampy pains, though they arn't too bad at mo. Don't let them fob you off, there are other members on here who are in 40s and 50s with it, and I've even heard of younger people too.. Sorry not much advice, others members very helpful, wishing you the best <ee>
Hi
Sorry to hear you are struggling. I have been diagnosed with PMR and TA, I am 56. I have struggled with 'unknown' aches and pains for 5 years (so I would have been 51 when my bloods showed inflammation - a double bereavement seemed to be the stress factor that kicked it off), but they were not sure what was wrong so sent me of with Naproxen, which didn't help. Then blamed age, the menopause .....then the TA/GCA kicked in about 2 years ago, missed diagnosed that as TMJ. Then when I was so poorly I got luck and saw a good doctor who referred me to a Rheumy. Doc had thought it may be fibromyalgia, so I was shocked to find I had PMR and TA. So now on steroids....... not sure if that helps at all??
Thank you for your thoughts and more evidence you can get PMR in your 50s. What are TA and TMJ please, I've not come across them before?
Hi, I was 54 when diagnosed with pmr in January of this year. I have a very good GP now & has suggested not bothering with a rheumatologist due to other patients of his not having much success following referral.
I am reducing slowly & so far so good as far as pain & stiffness are concerned (always a little of both but it's bearable) but the severe fatigue, nonexistent motivation, sweating & inability to sleep are really getting me down & work is exhausting & the weight gain depressing.
Anybody who says it's not possible at our age needs to live a day in our bodies & then their attitudes might change!
Good luck x
That's so sad! From what people are telling me if you are not having much success with a rheumatologist you should change rheumatologist not give up. Especially if you have PMR at our age. Although in the early stages it seems there is little you can do except take the Pred. Read all the advice on here about managing symptoms and Pred, it's been very useful for me. Thanks for responding, more evidence to support me.
Temporal Arteritis, is also known as Giant Cell Arteritis - it effects about 16% (I believe) of PMR sufferers, who have developed this if the PMR has not been dignosed and treated. It can also be a condition on its ownn. TA is a vascular problem with the arteries in the temple narrowing, causing headaches, pain in the face & jaw and causing problems chewing. TMJ is what I had been diagnosed with for the face pain, it stands for Temporomandibular Joint Disease often caused by grinding teeth etc. I had not heard of either of these until a few weeks ago!
Drivel - I was still 51 (just) when mine started and it is still there over 10 years later.
Even the international guidelines now say it should be considered in over 50s with the appropriate symptoms. There are overlaps with fibro but the clincher is the response to a dose of 15mg of pred - fibro does not respond, PMR does.
I do wish they would understand that illness is NOT a respecter of age. There is no disease that you can have at 50 that you couldn't have at 49 or even younger and PMR and GCA are no exception. A group of healthcare professionals including me and my husband had just this discussion a few days ago - there was steam rising I can tell you!
As for getting off the pred - if you have PMR you need pred to manage the symptoms, there is nothing else that does it as well unfortunately. You can stop the pred and put up with the pain and discomfort or you can accept taking pred as I have done and it allows me a normal life. Used properly pred isn't that bad - I can say from the bitter experience of 5 years without it that taking it is infinitely preferable!
No doubt your rheumy also would say that you can't have GCA at your age. Unfortunately he is wrong there too: a 37 year old man in South Wales died of a stroke a couple of years ago. It was due to undiagnosed and untreated GCA - proven at autopsy by the pathologist. Whoever you can argue with as to whether someone has GCA or not - you can't argue with what the pathologist finds.
And do tell Dr Mackie what this rheumy has said - because she needs to know! Her mission in life is to educate people about PMR and GCA and there is no better place to start than in her own backyard. In fact - there is probably no reason why, if you can't get referred to her you should write to her.
Mine definitely responded to 15mg of pred, I was like a new woman overnight, suddenly able to move again. So much so I overdid it a bit and went on a yoga holiday, swimming and walking every day too, whereas before I could hardly get out of a chair or walk without help. And before the Pred I'd wake up in agony with pain in the neck, hip, back and shoulders and this mostly went away after starting Pred. If it looks like a duck and quacks like a duck it probably is a duck, right? I'd tried Amytriptalene and painkillers just before that but it did nothing. Strangely though, the plasma viscosity test only showed mild inflammation, but my GP believed it was PMR because of the amazing response to Pred. The horrible rheumy I saw dismissed that idea too and said 'lots of things respond to Pred'.
The 'eureka' moment for my GP was when I said about the neck pains and stiffness on waking which gradually reduced during the day. I hadn't really mentioned the stiff hips as I'd put that down to ageing. By then I'd thrown out my bed and got a new one believing that to be the cause of the problems but it didn't make any difference! We tried Pred and the result was miraculous as I say.
No sign of GCA ever but I am vigilant on the look out and would act quick if anything happened. I do have other eye problems including a cataract that predates Pred but seems to have got worse rapidly having been stable for 10 years. There are complications of having it removed though due to other eye problems (RP). I also have shoulder problems (bursitis) probably more connected to a fall last year than PMR. I did have a frozen shoulder before PMR and this probably complicated the diagnosis as I was being treated for that with steroid injections and physio. Unfortunately the physiotherapy really hurt my neck etc as by then I guess I had undiagnosed PMR.
I'm wondering, is it common to get frozen shoulders before PMR as a few people have mentioned it on here. Then the other shoulder started, which can happen, though this may have been the onset of PMR. The L shoulder was definitely frozen because I had an ultrasound but they didn't check the right one. I also had dizzyness, balance issues and nausea but we put these down to a botched eye operation to remove a cataract which I won't go into detail about. I remember I just kept saying to my GP that I felt so ill and ached all over.
I also remember having a really bad flu-type thing which dragged on for months and made me really weak and achey especially in chest, shoulders legs and hips- with hindsight this may well have been the start of PMR.
By this time I was beginning to feel guilty about going to my GP all the time and well-meaning friends were just telling me I was stressed and needed to do more exercise. I joined a gym and went 3 times or more a week which actually made me feel worse not better, yet everybody told me that was just because I was so unfit and to keep on. At one point I had to be helped off an exercise bike as I just couldn't move my hips and having to be helped out of the swimming pool because I didn't have the strength to pull myself out. Again with hindsight, doing so much exercise was probably making the undiagnosed PMR worse.
Thanks for the advice PMRpro and everyone on getting referred to Dr Mackie, I'm seeing my GP in 2 weeks to start the ball rolling. I can't fault my GP really, although it took ages to figure out what I had, he did keep trying different things and as he says just didn't think about PMR at first because of my age and all the other things going on like the frozen shoulders and balance problems.
I think also I should maybe put in a complaint about the other rheumy as he really was rude and dismissive and I did not get the dignity and respect and treatment I deserve, definitely not going back there.
If its any comfort, this type of person is rude and arrogant with their fellow professionals. It's the same mentality as the hairdresser who says "Who cut your hair" to the new client. They have a superiority complex which is not susceptible to anyone's opinion than their own.
Hi
i am 57 and have been ill since jan 2015
Only found out what was wrong with me in march 2015
Rhemy doc reckons the vaccination i had done in jan 2015 i had a allergic reaction an this brought on pmr
how unlucky am i
i have been feeling rottem
pain in shoulders and hips
i want to come off steroids also
i also thought i was getting better. But last couple of days feel rough again
anybody else feel like this?
I got it just before my 60th birthday. IThe condition responded immediately to prenisolone, however, as I've reduced the dosage, the symptoms have returned. I needed 25mg to get it under control, but the symptoms come back when I get down to 10mg.
Hi tangocharlie
I became unwell back in May this year, with symptoms very much like PMR am 55 years old- one rheumatologist said it was looking like PMR, had a brilliant first response to pred but when I tapered down too quickly symptoms came back again.I had a pelvic MRI which showed massive amounts of inflammation and was down to 2mg of pred for the MRI and bloods and in a lot of pain and discomfort.My current plan is that I had to go back up to 15mg red and am now on 10mg and not tpainfree but fairly comfortable and can go for long walks etc and do most things.My current rheumatologist mentioned maybe methotrexate if I can't reduce my steroids.I think there are quite a few youngsters like us with PMR unfortunately
Many doctors, both GPs and rheumatologists, try to get us to taper too fast. From what I can gather reading people's tales on here and certainly in my experience, 5 mg Pred or possibly 7.5 is the minimum for at least 2-3 years. I did a short trial of MTX after about 3 years, it didn't work for me but I wasn't keen on switching anyway. When I weighed up the side effects of weight gain and sleep problems from pred, but knowing that it works well, against the fact that MTX is more toxic, has its own side effects, doesn't work as well and needs complicated monitoring I wasn't keen to switch anyway TBH. All the best, you'll find this forum a great source of support and knowledge, people like PMRPro know more than anyone about this baffling disease.
I was diagnosed with PMR in January 2019. Dr. says I've probably had it for 5+ yrs. I'm 56. I did 2 rounds of steroids. No more. They didn't help much. Im typically down for 4-5 days. Good for 2-3. I find that 1 tylenol and 1 advil works best for the pain.
Hi Kathie, this is an.old thread. However if you get relief from nsaids you perhaps need to have further investigation of you condition as Tylenol etc does not work on PMR pain.
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