Hello ladies, I'm new to this forum and very happy that I found you!❤️
My situation is very complicated I don't know even where to start. I'm a Lithuanian lady 62 years of age. I work four days a week and I travel to work and back for almost 3 h. But I'm lucky because one day I work from home. English is my third language and isn't perfect so forgive me for my mistakes.
I have been diagnosed with severe osteoporosis in 2017. That's why I did weight-bearing exercises. Last year I hired a personal trainer to show me how to do it correctly. I did weight training combined with cardio twice a week and a few pilates classes and one aqua class. I had stiffness in the mornings but I thought that was because I'm ageing. Gradually I started to feel pain in my legs, in my buttock and in one of my arms. I thought it from my training as my trainer was pushing me. But I came to the point where I understood that there is something more serious as the pain was all over my body starting from my neck on both sides, down to my upper arms, my buttocks, groins and down to the knees. I contacted my GP clinic but I got just a phone call after two weeks. My GP could not tell me anything over the phone so I had to wait for another two weeks to see her face to face. When we met she said is nothing she can do as my blood test came normal. She referred me to physio. But I went for private physio treatments as I couldn't wait for the NHS appointment. But the physio didn't help me at all. I had acupuncture which didn't work for me either. So three months on with severe debilitating pain I still didn't know what happened to me. I couldn't dress or turn around in bed anymore. I went to Lithuania to visit my mother and I booked an appointment with a rheumy. My blood test came as normal again but the rheumy said I have classic symptoms of PMR and prescribed me Medrol 4 mg twice a day and gradually reducing it to 0 in three months. This medication helped me almost within hours. But complications started back in the UK. I phoned the GP telling them about steroids. He was concerned because this medication isn't in use in the UK. And it is stronger that's why 8mg made a good impact on my pain. The GP wanted me to see a rheumy as soon as possible because he didn't think that I had a correct diagnosis as my CRB marker just once raised to 10.14 and all other times were normal. I met a rheumatologist another week. It was the worst doctors appointment ever! She was abrupt and I felt like everything that has happened to me is my fault. She was angry that I went abroad for a diagnosis, and she said I don't have PMR. She didn't look at the test results and summary which I brought from Lithuania. They have been translated into English and verified with all legal stamps on it. When I asked why I have such severe pain, she said that I overdone exercises and I could manage it with painkillers. I said I took painkillers but it didn't help me. I said if you think I don't have PMR so I don't need steroids then. She said, no, we cannot eliminate it because in very rare cases it can be PMR without inflammation markers raised. So she prescribed me prednisolone 7.5mg and 5 mg alternate days for two weeks. And 5 mg until I meet her later in October. Also, I have unexplained moving pain around my teeth, jaw and cheeks. The rheumy told me - this is because I grind my teeth which isn't true. I expressed my concerns about having meds for my osteoporosis because I don't know what's going on in my jaw. She was very unhappy about it either. I have to mention that just before the pandemic I had two teeth implants. I had a jaw panoramic Xray recently - everything was fine. So I'm so confused now. I still don't know what has happened to me. I don't know why I have pain in my jaw etc. I'm not sure if I need to take steroids either. It would be interesting to know if someone on this forum has been diagnosed with PMR without inflammation markers raised.
Sorry for my very long post. Thank you for taking the time to read. I wish to you all health🙏
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Morningdew62
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Sorry to hear you had such a terrible appointment with a rheumatologist… really not good enough.
It is highly possible have PMR without raised inflammation markers, in fact between 7-20% of patients don’t have them, which is why symptoms are the key. Unfortunately because it’s listed as a common symptom, many patients struggle to get a diagnosis if theirs are perceived as normal.
Your jaw pain is a bit concerning as well. I think you need to contact your GP again, and insist upon a F2F appointment so you can explain everything you have detailed here .
To most of us on here, your description sounds very like PMR, maybe even GCA, and you do deserve more consideration than you have been shown by the medical profession so far.
Welcome - and absolutely nothing wrong with your English! Just one point - we have a load of gentlemen here too and they do feel left out if they are ignored
Well she is not only a rude and arrogant person - she doesn't know much about PMR! My Italian doctors don't have a hissy fit because I got my PMR diagnosis in the UK. If you are ill when you are away from home you may well get a diagnosis abroad. Hope she is ill abroad sometime and gets a similar reception!! And not all countries use the same drugs - I was on prednisolone in the UK and was switched to Medrol here because our area doesn't use pred. Had I gone to a doctor in another part of the region - they use prednisone.
I had difficulty getting a diagnosis because MY blood markers were within normal range - but they were raised for me, It happens in up to about 1 in 5 patients, especially younger ones although you aren't particularly young (I was 51 when mine started). As a result, symptoms are always more important than the very non-specific blood markers they use. It is even possible to have GCA and have blood markers that remain in normal range - Snazzy on this forum sat in the ED with her vision shutting down and she STILL had low blood markers.
Where in the UK do you live? You say you had private physio - is a private appointment with a good recommended rheumy possible for you? What hospital are you under at present?
Both your Lithuanian doctor and she have used VERY low starting doses. Does the pred dose you are on control the PMR symptoms? Does anything make the jaw and facial pain worse?
@PMRpro Oh, my apologies for not including gentlemen in my post The best compliment for me is if someone says my English is good I live in London and work for NHS. The area where I live is under the Royal Free hospital or more specific the Barnet hospital. No, the physiotherapist couldn't recommend me anything except carry on with physio treatment and a gentle exercise regime. The doses are low but the 8 mg Medrol reduced my pain by probably 98%. Now I am on 5 mg of Prednisolone, my pain returned but it is still manageable. I'm able to do my pilates and aqua exercises. I haven't noticed what makes my teeth or jaw pain appear. It happens mainly at night. I wouldn't say that the pain is worsening just it doesn't go away. One night might be pain on one side, and the next night on another side or no pain at all. The pain isn't strong and doesn't last but it still wakes me up.
Do you work in a hospital as you mention you work for the NHS?
Sadly I am all too familiar with Barnet General and know who the Senior Consultant is at the Royal Free and neither would I be inclined to see. If you are that way, someone on here recently gave an excellent report on their experience at Watford General. Not too far from Barnet. Your GP should be able to refer you to them. I forget the name now but will see if I can find it.
Sophiestree thank you for your reply. I work at the hospital in an admin capacity. Do I have a right to choose a hospital for the diagnosis and treatment? Once I asked my GP to refer me to the hospital where I work and he said he cannot do it as the central booking team picks up all referrals and schedules the appointments.
Are there other GPs in the practice that you can make an appt with?
Or perhaps write a letter to your practice explaining your concerns regarding your treatment and how you are feeling and you would appreciate it if they could refer you.
I have looked Charlotte Wing up and I'm not sure she has a private practice, so going down that route is perhaps not an option for that particular consultant.
When I asked my GPnshe told me I could go to Edinburgh if I wanted to, she just needed to know where so she could put it in place.
Unfortunately I no longer know any of the GPs in Barnet (my father was a GP trainer) as they are all retired.
Perhaps moving GPs is another option if you ask around. Anyone you work with have any good GPs?
Is it Barnet General that you are seeing your current consultant?
Or, I've just read the reply from 'notsoperfect' below. They are recommending a more local consultant to you.
You need to be heard. I feel for you. Particularly your new jaw issues. They could be a cause for concern and you need that checked.
Used to be that in England the patient was able to choose the hospital Trust for their first referral - different Trust different consultants. And you are entitled to a second opinion. That may have changed of course - you'd have to check,
Morningdew62. Hi. we aren't all ladies here. DL is right. It sounds like you could also have GCA maybe not PMR but if you have both like me then bad luck. You need more than the dose prescribed to deal with inflammation even if you blood markers don't show it. You also deserve better attention although your consultation will be familiar to many on here. Congrats. on your English since it is third language.
@cycli Oh, I didn't realise that there are gentlemen too - my apologies I read that this disease affects more women than men that's why unconsciously I thought there are ladies only. I hope all gentlemen on there forgive me for this lapse thanks for the compliment on my English - I'm delighted
You are more than welcome. You would have to go some to offend me. You are in good hands here so absorb all you can. Ask what you need and be well informed so you can advocate for yourself and counter the ignorance of your medics.
your story I am sad to say, is depressingly familiar. I agree totally with our experienced patients who have picked up the salient points. You need someone who understands PMR and GCA and is prepared to give you up to date, appropriate treatment. We maybe able to recommend someone from our secret list of stars. Let us know roughly where you are geographically or precisely if you private message Jinasc who has a list.
You are very welcome to this site, so glad that you landed appropriately here. Have a look at FAQs you are going to have to become an expert patient. You English is exemplary.
@SheffieldJane thank you so much for your kind words and support. I hope with the help of more experienced colleagues I will sort out this confusion with my diagnosis and dose of medication. I live in North London.
The others have said it all really. Your symptoms sound very like PMR, and possibly GCA also (although you’d need medical confirmation). You need and deserve better attention for this. Can you get an appointment with a different GP or rheumy? I do hope so as you have not been well treated so far, it seems.
It seems particularly unfair when you’ve already tried so hard to help yourself, with exercise and so on. You definitely need proper medical attention now. Read up all you can from this site (especially FAQs, on the right of the screen), make yourself a well informed patient so you have the best chance of a helpful medical consultation.
I hope all goes well. Good luck and I look forward to hearing how you get on xx
Nextoneplease thank you for your kind response. Unfortunately, my GP supports the rheumy opinion regarding my diagnosis. He said in his experience of more than 20 years as a GP such low markers of inflammation unlikely will be PMR. His and the rheumy idea is to put me on the lowest steroid dose possible to look if the markers go up to confirm or decline the PMR. My GP tends to think that I have fibromyalgia.
The Lithuanian rheumy told me straight away that’s not fibromyalgia. She said exactly what you said - I responded very well to steroids. And my symptoms don't much all symptoms of fibromyalgia. I could try to request from my GP a new referral for a second opinion but he supports the current rheumy so I'm not sure if he would be happy to refer me again. But I will try it and I will update you all with the outcomes.
That's partly why i asked where you are and if a single private appt is affordable. You seem to have drawn the short straw in rheumies - there are far better ones around London for the sake of a short journey, Some will add you to their NHS list if appropriate.
I'm also an NHS worker (Radiographer) and I work for the Royal Free London Trust. I am based at Edgware Community Hospital.
I was diagnosed with GCA and PMR last August and am under the care of a very good Rheumatologist at Northwick Park Hospital. His name is Dr Hamdulay and he specialises in GCA. Don't know if you could get a referral there but might be worth a try.
if you are looking for a private appointment try Huw Beynon in central London. He also works at the Royal Free. He is very kind and understanding and has lots of patients with PMR and GCA. He also sees you very quickly.
I was diagnosed with PMR by a face to face appointment with a GP who asked me to move my arms, sit down and get up etc. He recognised the stiffness and weakness. My inflammation markers were absolutely normal. I was prescribed steroids. I started on 15mg. The pain went almost the same day.
The jaw pain sounds worrying. Go to A&E and report it there. It may be the start of GCA.
You have lots of great advice and guidance in the replies above. Apart from admiring your English (it's excellent!), I can add that it took my rheumatogist 9 months to diagnose my disabling PMR because I had no inflammatory markers.
Despite the widespread acknowledgement that these markers are often absent in PMR patients, my experience seems remarkably common, and given the degree of pain and disruption caused by PMR (and of course, GCA too, though I don't have this) I find it baffling. My consultant did absolutely no other diagnostics in that 9-month period apart from repeating the blood tests, which gave consistently negative results for inflam markers. I don't know what changed his mind, but thank heaven something did: for me, taking the pred literally switched off my symptoms overnight and gave my life back to me!
Tapering the dose from 15mg to 0.5mg daily has been a long, 5.5-year process, but with clear advice from the rheumy nurses and the GP surgery's pharmacist to taper REALLY SLOWLY, I'm now on 0.5mg daily and, I hope, heading for zero!
Unfortunately, I only came across this forum very recently, but it's fantastic - a wonderfully generous source of guidance, perspectives and support from those who understand the real-life implications of PMR /GCA all too well.
Thanks to you all, fellow 'forumers', and all the very best to Morningdew62!
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The best compliment for me is if someone says my English is good 
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