Have I just had an appointment with the worst NHS Rheumatologist out there or has he got it right? It’s probably never been PMR, says he, just arthritis! Your CRP is 1. It certainly isn’t extra cranial GCA as there is no claudication on chewing or speaking.
He felt round my jaw, expecting TMJ which my dentist had already checked for and not found, then on finding a pain response on my “mandibular” nerve offered to refer me to a Maxillo-facial consultant.
On diagnosis in January 2017 after months of pain and stiffness, my GP prescribed 3 days at 50mg of prednisolone, followed by a week at 25mg, 14 days at 20mg, then 15mg for a month, then down over a couple of months to 10mg then carry on tapering 1mg a month to zero. It would all be over in two years. WHAT PLANET WAS HE ON?
Well you wouldn’t have felt much of anything after that, said the Rheumatologist, just full of energy.
I can almost hear PMRPro and Dorset Lady screaming in horror, as am I. I am totally gobsmacked! Am I to believe that I have swallowed goodness knows how many grams of harmful steroid over six years and suffered the consequences of doing so without a correct diagnosis and no referral by the many doctors I have seen in different practices as I moved addresses and counties in the British Isles?
The raised markers at the start and since, the bilateral shoulder pain and the classic inability to turn over in bed, climb stairs, get in and out of the car or bath, were surely indicators of PMR. It has always been clear that my doctor didn’t have a clue about it. But he didn’t refer me to a Rheumatologist, neither did my doctor when I moved to Kent, nor when I moved to East Sussex. I put a lot of pressure on the young Registrar when my symptoms began to worry me after tapering with great difficulty to 6.5mg and rejected leflunomide which was the only thing to come out of my last appointment at the same hospital two years ago.
The Consultant today said he wouldn’t have prescribed steroid sparers Leflunomide or Methotrexate under 10mg because they weren’t proven to be very effective and had known detrimental side effects!
I don’t know whether to cry or scream with anger, I feel so let down. And so confused. With a history of medical negligence which has led to decades of mental health and PTSD, years of counselling and anti depressants, I feel like I might EXPLODE!
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I too am gobsmacked to read your post and can't imagine how you must be feeling today. You describe classic PMR symptoms in 2017 and we all know it can go on for years ( since 2016 for me). Your CRP may be 1 just now, but it hasn't always been. Your current dose of pred must be dealing with any inflammation.
Will you make an urgent appointment to discuss this consultation with the Registrar who referred you and make sure they know what effect this is having on your mental health and well-being?
I am lost for words, but want you to know that I'm thinking of you, as will be many others on here. 🌻
Thankyou Sue. I will wait till his report reaches my doctor or my NHS patient app and request a second opinion. My head is spinning and I cannot make sense of what happened this morning. I must be with my pony to get my hysteria under control. Just off there now, love Chrissie
Well - you wouldn't expect to see much now and I think it is extremely unprofessional for a doctor who never saw you at the time to make such a pronouncement about a diagnosis that seems perfectly in line with the symptoms you experienced - and you responded to pred I assume?
Claudication is more usually a symptom of cranial than extracranial GCA unless the carotid is affected and even so it does not appear in all patients, there is NO symptom that is 100% typical for GCA or PMR. ARM claudication is typical of extracranial GCA.
I will agree with his pronouncement that "steroid sparers" aren't worth it under 10mg pred. But "full of energy"???? We wish!
What hospital is this? Your experiences in Kent parallel those of a lot of other patients over the years. One lady in Kent actually got herself referred to Sarah Mackie in Leeds and travelled - and eventually got the correct diagnosis of ankylosing spondylitis which had presented as PMR and later mimicked GCA.
This was in Hastings, East Sussex, under Dr Pool. I recall now that when I was admitted as an urgent case with in inexplicable blinding headache he popped his head round the curtain as I was undergoing a lumbar puncture to eliminate a tumour and pronounced then that it was probably steroid withdrawal and not PMR. I thought then that he was aPMR sceptic.
I saw Rod Hughes in 2019 and he didn’t question the diagnosis.
As we are on at least a monthly basis - some of the rubbish I hear reported is scary and I pass on a lot of it to Sarah Mackie who is equally concerned.
The knowledge on this forum gave me hope that things had moved forward in the medical and scientific world, so I am dumbstruck by the cavalier approach of this Rheumatologist. Having challenged the Ministry of Defence over medical negligence back in 1992, I am not averse to fighting my corner, just wish I didn’t have to.
you fight them Zebedee44. That rheumatologist doesn’t deserve the title of rheumatologist! He should be challenged - & hung out to dry for how your last 6 years have gone through unnecessary meds.
Oh Zebedee, I’m so sorry to hear this! What a dreadful consultation which must leave you with so many questions as well as so much anger 😟
Speaking of which….did he say what kind of arthritis? And what does he want you to do now? If I’ve got it right, you’ve really struggled to reduce your pred dosage so how does he expect you to deal with pain and stiffness? I’m furious on your behalf 😳
On the other hand, I guess fury will get us only a limited way. I agree you need a second, independent opinion. Do you by any chance have a helpful GP?
I hope your pony is giving you some comfort - and we’re all here for you 🤗
Thinking about our discussion since I left I have wondered the same. He has given me a chart for tapering from 7 - 6mg which takes 7 weeks, in spite of my telling him I have never achieved a 1mg reduction. After that, goodness knows. Surely if it is an arthritis of some sort my further treatment comes under his department.
I shall sit down now and draft a letter to the young Registrar who referred me with copy to my appointed GP who also knows my case history. I live at the furthest limit of East Sussex and the practice covers patients in Kent too so I shall hope for a referral out of the area.
My letter is drafted with a copy to my appointed GP and enclosing the report PMRPro linked above. Ready to hand deliver tomorrow. I have been through similar before with my litigation for medical negligence and this is NOT a good place to be in again.
Ive just started taking my cholesterol level seriously but quite honestly I really need comfort food tonight, which for me is Hot X buns with BUTTER and honey. I may even have to resort to the only alcohol I have in the house, some horrible rhubarb and ginger gin!
How can they know if they didn't see you at the time? The greatest unmet need in PMR is a definitive test to confirm it - or at least an algorithm that gives a likelihood. Prof Vanessa Quick has one that seems promising for GCA but I don't know of one for PMR.
A good response to pred is one of the qualifying criteria and the huge dose I was prescribed at the start did that, although not as quickly as others report. That and the lowering of raised ESR and CRP in my case certainly seemed to confirm the PMR diagnosis. It was months before I felt truly better but there was nothing to suggest I needed to have the condition confirmed by Rheumatology so I just carried on doing what the doctor told me.
I saw a the rheumy privately every six months for years. When I was down to 5 mg of prednisone i cut them in half to 2 1/2 and after another 2 weeks I went cold turkey and stopped taking them. It was not a problem after about a week. It worked out for me BUT I would not recommend that course to anyone else. The rheumy said i obviously did not have PMR and said I have arthritis. My face and weight went back to pre prednisone and life was much better. I have some pain still but at my age I can expect that. I had two separate hip replacements during Covid and that got rid of a lot of pain. I just have pain in my neck and shoulders and paracetamol helps a lot. Good luck….
It’s not much comfort but I remember being told about 5 years ago by a GP that because I couldn’t tolerate a half mg reduction of pred at that time that I certainly didn’t have PMR but that I had RA. I don’t think that they realise at all what you are going through or have been through.
Did you see Rod Hughes privately or on NHS? I have stuck with him , having changed from private to NHS. If there is a query on my diagnosis or what I am taking or not taking, I refer GPs to him. I speak or email him when I need to ( I’m way out of his area- I’m in the Midlands) He has said jokingly that I use him as my insurance against wrong information, advice etc from my GPs. I said that yes he was right!
Do try not to get too stressed, although I know it must be so so annoying, as this will only be making your own symptoms worse. Do let us know how you get on. 💐
Thankyou. I have had a rough night and feel very confused as I honestly feel the PMR diagnosis was correct. At least that justifies in my own mind the long period of life with steroids which continue to reduce pain, something which wasn’t happening with increased doses of gabapentin, pregabalin, and opiates before prednisolone was prescribed. The Rheumatologist seeks to have ignored that part of my history.
I saw Rod Hughes privately and would again if I can’t get anywhere with the NHS. Chertsey is not so far away from me in East Sussex.
I have had the same response during the last 10 years, and never had any treatment from the NHS. Fortunately I have got over most of it now, spent a fortune on acupuncture although only income is state pension and pension credit. Lately I have developed some sort of arthritis in my hands, blood tests showed no raised inflammatory markers, just had a second blood test before getting an x-ray. Obviously if we don't fit the "normal" method of diagnosis, we get ignored. I'm going to fight for my health this time, as I am becoming disabled once again.
Thankyou redavenger, what a good name for a person who fights for their health and treatment. After my previous experience of medical negligence in a military hospital I really hoped this consultation would have provided the information and support I needed to continue the long struggle with PMR. I am devastated by the Rheumatologist’s findings and honestly dispute them. He hasn’t offered me any hope or support for the future, simply pulled the rug from under me.!
oh Zebedee44 what horrendous reading! I so feel for you. I do hope you can get a second opinion asap. To have been on steroids all that time and to be told that - well - it’s frightening how “professional” can get things so wrong.
Hope you soon get some reassurance of what it is you exactly have.
I simply wanted to be confident moving forward through the lower doses of pred that I was only dealing with PMR, as additional pains round my jaw and chest were frightening me. To think that I have fought for six years to get to this point and still have the toughest bit to go when it was possibly a wrong diagnosis is inconceivable.
I am aware that the pain in my hands and thumbs pre dates the onset of the Polymyalgia symptoms, and it was reassuring to be told that GCA didnt present in the way I described, but the Rheumatologist has left me gasping in disbelief and, to be honest, pretty bloody angry.
I had much the same as you about six weeks ago now. The rheumy, who I hadn’t seen before, seems to think all my problems are due to the fibromyalgia I have had (& still have) for 15 years & not PMR. I had textbook symptoms & a great reaction to the pred. My doctor is a little bemused, I think, but I had a good follow up with him, & made a plan B, & a plan C. I waited ten months for my rheumy appt, during which time I was diagnosed with hypermobility, raynauds syndrome, essential tremor (neurology issue) & possible sero negative arthritis (already have bad osteoarthritis). Consultant ignored all that, & ordered me off steroids, whilst pacing the floor). He told me to reduce by 1mg a month & be off by August. If I got sick again (had a bad flare up last year & was put up to 10mg by doctors) I must ‘tough it out’! He said my CRP is only 7, and has not been higher than that (well, not when tested, but no need to test during bad flareup). If you search my name you can see my posts, longer version is there. Right now I’ve made it down to 1mg & am suffering a bad flare up & attempting to tough it out. My quality of life has taken quite a deep dive!! You’re not alone!!
Oh Pix I’m so sorry to hear all that and know how it makes you feel. With all the forum support this morning I don’t feel quite so alone now but reeling from the slap in the face. I hope my own doctor will come up with a plan B.
Other than the taper chart from 7-6mg the Rheumatologist didn’t propose anything beyond that, but whether it is PMR , extra cranial GCA or arthritis, I sure won’t be going to see him or anyone in his department ever again.
I hope your doctor understands, & has a plan B! I hadn’t gone to see a rheumy because of polymyalgia & had no intentions of discussing it at all! I don’t have any queries, I’ve learned the answers from this forum. It was supposed to be addressing the diagnoses from my doctor of hypermobility, probable Ehlers Danlos syndrome, & sero negative arthritis! But as soon as he saw I was on steroids, & fat, well, that was that!! Due to have cortisol tests in a couple of months time, when off steroids (I’ve come down from 3.5 to 1mg in five weeks & have a very bad flare). Then a telephone appointment with him. He thinks I’m Addisonian. Didn’t tell me, just put in letter. Didn’t copy me on letter (neurology wrote directly to me & copied my doctor!) Told me I must have no more steroids, oral or by injection! Lovely guy. Wonder what he’d do if he was in chronic pain for 9 years, with acute pain, too…& had fibromyalgia, polymyalgia, bursitis, sciatica, a benign spinal tumour, hypermobility, Raynauds syndrome & a partridge in a pear tree! Would he just ‘tough it out’!!!???!!! You have to keep smiling, Zebedee44!!
With all that I read here I consider myself lucky that this Rheumatologist didn’t demand a rapid taper, indeed didn’t propose any kind of plan to treat the pain I do have for the longer term.
But you deserve a proper consultation! I can see you have been given a taper, though. But you don’t have to follow it! You can try, then if you have a flareup, contact your doctor? Or go down by 0.5mg instead of 1mg. I see arthritis coming up in this post now! I was referred to rheumy 4 years ago due to worsening osteo arthritis. She spent the consultation re-diagnosing fibromyalgia & gave me a booklet on it (I’d had it 10 years by then & had been diagnosed by 3 consultants)! BUT she noticed I was walking on sides of feet to avoid pain, sent me to orthotics dept, they made custom built orthotics (insoles) to help relieve it & get me walking. Then she examined my hands & sent me to a nurse specialist in rheumy dept who gave me splints & exercises, & was very helpful. I saw her 3 times, then you’re on your own, really…well, I was!! No pain relief, though my doctor is talking Of changing me from tramadol to low dose morphine (but for other issues!,) After a bad winter my doctor thinks I have rheumatoid arthritis. But the consultant rightly says he cannot see any trouble as the steroids mask it completely, & I’d had a depo medrone steroid injection two weeks before. He can’t tell if I have it, & the depth of it, until I come off steroids & display the symptoms again. My doctor had waited ten months for me to get an appointment & none looked forthcoming so he treated me himself, but this kind of backfired!! Hope this helps. I’m not trying to take over your post…honestly…I have no questions right now. I am doing a rapid taper, I’m having a bad time, polymyalgia wise, but my body accepted the drop from 3.5mg to 2mg. Now I’m starting 1mg. Time will tell! Good luck to you! My thoughts, after a few weeks is that because people are having to wait a year in our area the more patients thry can discharge, or just give reading material to, the sooner they can attack some of the backlog, maybe!! I see you’ve seen the great rheumy, though…presumably he said you have PMR????? You could phone up & see if you can see him again, but under NHS?? Just an idea!
When you say « the great Rheumy » do you mean Rod Hughes, now evidently Professor Rod Hughes? i have already contacted his office and awaiting a reply.
My appointment with the local team came through in three weeks but I have certainly come away with the impression that they do as much as they can to avoid the expense of further investigation. Perhaps the referral to Maxillo facial will throw light on my jaw and chin pain. Looking back over my diary notes I find constant reference to jaw pain. It has certainly got worse at lower doses of pred.
But if the man says I probably never had PMR from the start, maybe he is right! But he hasn’t proposed anything as an alternative, just a taper schedule from 7-6mg. And then what?
Then slowly taper off the steroids. If you don’t have PMR you don’t need them. And yes, I meant Rod Hughes. I’ve considered paying to see him, & our journey us a lot longer! If you’ve seen him, you are still his patient! Presumably he diagnosed that you have PMR! So you just need a taper path to follow. I recommend the one supplied in this forum. I followed it from 17mg down to 5mg without issue, then a huge flare up. Back to 10mg as had other illnesses too & was quite poorly…& now I’m down to 1mg. Good luck with Dr Hughes, he should have the answers you need, I’m sure!
Thankyou for your input. It is the slow taper that has been causing the problem. I have struggled to get from 8mg in 2018 which I achieved in a year and have since had many flares.
I have tried to « tough it out » to 6.5mg for many months and now settled more comfortably at 7mg. The initial high doses concealed the pain of whatever condition the Rheumatologist believes I had/have. Nobody ever spoke about the difficulties of tapering through the lower doses when I started this steroid treatment, nor did this opinionated Rheumatologist. I wouldn’t have needed his input at this stage if I hadn’t been genuinely concerned that something else was going on which made the taper so difficult, it looks as if I was right, but certainly wasn’t expecting to have the original diagnosis questioned.
At my appointment in 2019 with Rod Hughes he drew the diagram Dorset Lady often posts showing the crossover of PMR and extra cranial GCA, hence my wanting to know if it was indeed extra cranial GCA that I was dealing with and which possibly explained why I am stuck. I’m sure if I do get to see him again he will confirm that I am right and that Dr Pool in Hastings is not.
But my mental health issues relating to medical incompetence are not improved by these encounters !
Diagram showing cross over of symptoms for GCA and PMR sufferers.
Even with Actemra I am struggling to get below 8mg - and there is no evidence of anything but PMR going on, My rheumy hasn't ever considered there might be something else, there is no sign of it. Some PMR is just resistant,
Is 8mg the lowest dose you have ever achieved? I guess it is the uncharted territory of lower doses with so much pain in my face, chin jaw and chest that has made me anxious. I needed some reassurance from the medics that it would resolve, certainly not this curved ball ⚽️ !
I guess the question is…you say you have many flares, but they could then be flares of another inflammatory disease? Perhaps that is what the rheumy is thinking! This is what my problem is…the steroids are masking my other inflammatory issues, as they are helping a bit at some times, but not all the time! Plus the steroid taking is upsetting my hypermobility & I’m lucky to get through a week without a joint dislocating! Sounds like a visit to Rod Hughes to find the truth is more important than anything for you…I hope it goes well!
so sorry to hear this zebedee. I have a friend who was diagnosed with pmr 25 years ago based on pain distribution and a raised CK with normal CRP. After over 20:years on steroids she was told that it was never PMR and made her wean off prednisolone (very painfully) She was gutted! I think her new diagnosis is myositis. Wishing you all the best
To be fair - if someone came on the forum and said they had raised CK and a diagnosis of PMR I would tell them to get a second opinion. CK is a defining feature - NOT raised in PMR, RAISED in myositis.
My heart goes out to you who is going through this mishegas. I'm shaking my head. It's quite scary. I too would be beyond angry. I have an "absentee" rheumy with whom I finally have a phone appointment May 2 and I'm thinking will she merely dismiss all the symptoms I've been experiencing since last talking with her in Feb. 2023, or will she actually listen. It's quite a list. I hope you get the answers, but from a completely difference source than you've been dealing with. Take good care and stick close to us.
I'm sorry to hear you are having a rotten time. Sending very best wishes 💐
I'm assuming that your initial diagnosis included blood tests with confirmation of quite-elevated "sed rate" and other PMR markers?
That said, the symptoms (including blood markers which may become negative/normal after years of treatment) do seem to change over time, not to say that they were ever static/consistent in the first place.
So a modified diagnosis might make sense years after an initial very positive diagnosis of PMR, not that any other drug besides corticosteroids will help.
I do wonder if there should perhaps be a revised name for the sort of background symptoms that persist nearly for decades, the sort of tendency toward PMR symptoms that may even exist (as in my case) without any positively-positive blood markers for PMR, but which definitely arrived with the onset of full-blown PMR.
"latent PMR tendency" or something like that, managed long-term by lifestyle (diet/exercise) options, supplemented with low-dose corticosteroids.
I say this because my own activity level (as in being active every single day) seems to play a defining role in my dosage requirement, and my own PMR has been replaced by what I might call a somewhat more benign case of "systemic hyper-inflammatory response".
I joined "club zero" last year for all of eight months, by way of being an exercise junky.
I really need to experiment more with other diet/lifestyle changes that might duplicate most or all the effects of all that exercise, since I might not be able to exercise quite that much as I age further.
Things like cutting back on caffeine and sugar, both of which raise one's insulin level (which correlates strongly with systemic inflammation).
I can’t seem to find the original levels in January 2017 ( they were high) but have pencilled a note in my diary that in August of that year my ESR was 18 and my CRP 5. By that time I was at 8.5mg pred and struggling, unsurprisingly I now know.
My awesome driving pony gives me all the exercise I can manage every day and I am proud that I have maintained a fairly constant body weight, blood pressure, and bone quality. But I have also suffered the side effects of steroids and the other associated drugs, and I’m not impressed that all this could have been avoided if the condition had been properly diagnosed and treated.
I have given up meat, alcohol, caffeinated coffee but not tea, and restrict my carbs, all to manage the inflammation. As far as I’m concerned I’ve done my share, but it’s now the pred itself that I have yet to deal with if indeed PMR was never the problem. Not funny!
Sorry can’t recall the source but read somewhere that 20% of PMR sufferers go onto develop Rheumatoid Arthritis - it’s possible to get the diagnosis wrong but I’d get second opinion if you can
I thought steroids wouldn't give relief if it wasn't PMR. Surely if you have had relief and tapered down in the last 5-6 years and responded to the steroids it by definition, is PMR? I very much hope you take this down the complaint route. and that you are feeling calmer now after this hideous man dismissed all your years of pain and troubles. What a thoroughly unprofessional individual.
Response to pred is not a definitive, rules out all else, diagnosis. Other things respond to pred and PMR only responds to enough pred and some need more than others.
It increases the likelihood it is PMR, and PMR is characteristic by responding very quickly but it isn't a definitive feature, inflammatory arthritis also responds to pred but usually slightly slower although some PMR patients aren't given enough for the almost instant response some doctors expect. It does distinguish between PMR and fibro - although there are doctors who claim fibro responds to pred too, no it doesn't, totally different mechanism. But it is a complex relationship and there is no black or white.
Thanks for your support and I am certainly in a confusion about what to do about this, especially as I have just found out that another forum member has had the same experience. I’m just waiting for his report to my GP before I take the next step. Having been down this route before I know it is long and distressing, with money the only compensation and not necessarily the doctor losing his job or apologising. I’m not sure I am up to it this time.
No don't think about compensation just that he needs to explain his treatment of you but of course don't do anything that you are not comfortable with. What an absolute **** he is, its enough to drive you to drink!
I’ve just seen your post about your consultation with Rheumatologist, I can’t believe what I’ve read because the same thing has happened to me and I’m sorry to say but it was the same Rheumatologist Mr Pool , also I was sent as urgent referral from my GP . I left after the consultation with him thinking why have I been talking this steroid for so long to be told I didn’t have PMR , I tapered right down until I’d completely got to zero. My gp sent me for physio because the report she had from Rheumatology stating that I probably had osteoarthritis and having some physio would probably help . Anyway I went with it to say the least the physio did nothing apart from aggravating the pain I was and still having. To date all I’m doing is taking pain medication, I feel so let down and don’t know which way to turn . I’m coming up 71 years old and fed up with being told it’s all part of the ageing process. I’d like to add I’ve never been sent for any scan or X-ray throughout.
I do hope you get some answers, I’m most certainly going to go back to gp now .
To be honest MacNa your post doesn’t surprise me and in fact supports my belief that Dr Pool is a PMR sceptic. I am waiting to read the report he sends to my GP before I decide whether to make a formal complaint. I wonder how many more people have come away from his consultation with this bitter experience.
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PMR still active after almost seven years
Confused & frustrated!
Dr.: You don´t have PMR and PMR is not a disease in the muscles?!
wrong diagnosis - paying the price!!
