briefly, diagnosed by GP with PMR in April this year, on 15mg of prednisolone - total relief (all day/night). Rheumatology Consultant said not PMR as CRP normal and I’m 54 years old. Told to Fast taper 15, 10, 5 then off over 4 weeks. I was Ok down to 5mg, twinges started - told to continue off. Once off ‘bang’!! Agony day and night. Been told to go back on 5mg while waiting another rheumatologist appt, can’t cope so upped to 10mg. Waking everyday with very heavy upper arms and sore wrists. Relief comes after my morning steroid dose. I feel worse than when I was tapering on 5mg. I’m lost and feeling really low. Have I had a flare from coming off? How long do flares normally last? Should I go back up to 15mg? Is morning stiffness to be expected even when on the correct dose? Sorry lots of questions but I’m getting nowhere with my Dr. Thank goodness for this group.
wrong diagnosis - paying the price!!: briefly... - PMRGCAuk
wrong diagnosis - paying the price!!
Where are you exactly? Time for a second opinion?
in Devon, uk. It was a private consultant that said it wasn’t PMR. So now going through NHS. I can’t even get to see the same Dr at my surgery. Seen 56 different Dr’s so far and they all contradict each other.
Oh dear! Of course your inflammation levels have normalised. You are taking a very effective anti inflammatory drug. I am sorry that you are suffering needlessly. As Snazzy has said, you need a doctor who really understands PMR and is up to date on treatment protocols. PMR is often treated at GP level. Is there anyone good in your practice? Familiarise yourself with FAQs on here, just above my post. Particularly tapering programmes.
This is awful for you! If you absolutely are unable to see your/a GP very soon as an emergency I suggest you ring 111 and explain what has has happened.
This next is very important: if you develop any new headache, jaw pain or vision changes you must go to A and E straight away for investigations. I hope this isn’t necessary.
Please let us know what happens.
—————————-
We don’t know exactly where you are in Devon but I have found details of a private Rheumatologist if they are within reasonable travelling distance and if you can stretch to another private consultation to at least obtain advice.
southwest.devonformularygui...
But that is the same risk as the rheumy she has already seen - not someone we know knows about PMR, It is a really difficult to know if you will get a sensible response or another or the same ilk.
And 111 isn't for this sort of thing - it is emergency advisory help when you cannot contact your GP or at evenings and weekends, not for sorting out bad advice.
With respect, I wasn’t suggesting that 111 would be able to sort out bad advice per se, but that the OP might possibly be put in touch with someone more knowledgable who may recommend a way forward. If I were in a similar position I would be exploring every avenue for a solution before the possibility of known complications of poorly managed PMR set in.
They usually refuse to. They are usually only available OOH - when the local GPs are closed. And I suspect their response to this would be to get an appointment with the GP. The medical call-backs are to assess if an emergency appointment with the OOH doctor, a house response by a doctor or an ambo is required. None of those is appropriate here unless the symptoms of GCA are apparent.
It is a new problem - the inability to access decent GP care is a nightmare but other than going private or turning up at the ED there isn't much alternative. My daughter says she hears patients all the time saying "I couldn't get to see the GP" - by the time they get to the ED to her, they are often very unwell.
As I understand it NHS 111 is available 24/7 and still I think a call is worth a try due to the extent of symptoms and debilitation. I hope RedRum who is in an unenviable situation soon receives appropriate care and attention.
I only know that people who rang when their GP was open were told to get advice there - maybe it has changed.
I don’t know 😔. What is very clear is that increased awareness (and knowledge) on the part of some members of the medical profession in terms of diagnosis and management of PMR would without doubt lead to a smoother journey for many patients who at present get a really rough ride. Roll on utopia!
Well - you say wrong diagnosis but I don't think it was and the rheumy is wrong. The only thing managing the inflammation was the pred - they have taken it away so the inflammation is back.
I had an almost identical story - my ESR was raised for me but never moved out of normal range and my CRP was only ever raised once - on a day when I had a bad episode of atrial fibrillation, heart also raises CRP. I was 51 when it started and not diagnosed (by myself) until I was nearly 57. I was given 6 weeks of pred to get through a trip to the USA - two weeks each of 15/10/5, and stop. Within 6 hours of the first 15mg I was human again - could walk up and down stairs normally instead of stomping like a toddler one step at a time and crawling up. At 5mg I was fine, within 6 hours of the first missed dose I was in bed, unable to move for pain and in tears. A GP gave me pred until I had the follow-up consultant appointment - where he wasn't interested, it wasn't PMR, it was inflammatory arthritis, Luckily a different GP who was good at PMR, snorted and said it looked very PMR-ish to her, here is pred. The consultant wanted to start me on a DMARD but that required specialist monitoring and I was about to move here to Italy.
I have had 2 consultants and a GP who are all experienced in PMR and now have a rheumy who is probably the most knowledgeable about PMR in the world. NONE of them think it is anything other than PMR and tocilizumab/Actemra has worked rather well to get me from 19 to 5mg pred so it is IL-6-mediated. There are NO signs of RA which is another option but tocilizumab is also used for some cases there.
Being 54 and a normal CRP are NOT reasons to rule out PMR. Nor is a normal ESR.
ncbi.nlm.nih.gov/pmc/articl....
academic.oup.com/rheumatolo...
scholar.google.com/scholar_...
I posted these links just a day or so ago - they need broadcasting far and wide - and especially to these doctors who claim it isn't possible. It is very possible and there are several of us on the forum.
Can you afford another private consultation? With someone who actually knows their stuff? It would involve a trip to Chertsey, but you will get a fair hearing and a sensible opinion from Rod Hughes there - he also does NHS, they all do, and sometimes will take you on if it is possible. But you have a pred-responsive myalgia - if it isn't PMR, it is something. Either way, you can't be left incapacitated because someone is wrong.
It is time the medical community got their act together. PMR is the second most common cause of rheumatological symptoms in patients over 50 - that is NOT to say that there are people under 50 who have it and get a wrong diagnosis. Until recently there hasn't been much financial implication because most patients were retired but that is changing with the retirement age already approaching the average age of diagnosis and an apparent increase in cases in younger patients who are still working or have family commitments that PMR makes very difficult. There is so much new information out there - but some doctors are stuck where they were when they qualified.
Print out the links - there is a PDF link for the third one - and insist on seeing someone f2f and present them with the backing evidence.
Think your original GP was spot on, so can I ask why as you had such a good result you decided to see a Rheumy privately? Who was wrong on inflammation markers and age.
Unfortunately when you have been messed around like you have you, you may need to go back to 15mg and start the whole thing again.
You need to go back to surgery and tell them their suggested dose of 5mg is not adequate- and refer them to original diagnosis.
How long have you been at 10mg? ..and do you have enough tablets to stay there for at least 2 weeks… hopefully by then you should see an improvement -but you do need to get the surgery onside -I doubt a Rheumy appointment will be very quick.. unless you go privately again.
see NICE info on PMR-
cks.nice.org.uk/topics/poly...
I think so too! Unfortunately after she diagnosed me she had doubts which led me to get a second opinion. I also think you’re right about starting again at 15mg but Dr’s don’t want me to increase if I can cope. Admittedly I’m coping but not well. Private consultant can see me later today. I’ve accepted the appointment but am anxious as he originally thought it was a vaccination reaction.
Ok -that’s good (hopefully) - a few on here have though covid or any vaccine triggered their PMR -so he might be partially on the right lines.. have also reply further down re bloods…
Why did you go to see a private rheumatologist if things were going well? Can you go back to your GP?
after my diagnosis my Dr had doubts due to my blood results - I was frustrated with the uncertainty so decided to seek a second opinion.
Blood tests done before or after you started Pred? Not that it really matters-different studies over the years have shown that between 7-20% of patients don’t have raised markers -ever.
Difficult situation. Perhaps your GP will have enough sense to realise that the steroids are helping and that not everyone has raised inflammation markers.
blood tests done day I went to see Dr. She put me on steroids as a precautionary measure - assuming bloods would be conclusive. Plasma viscosity high but CRP normal
My CRP was normal but my Doctor said that was not reliable as it can fluctuate. If the preds worked than it was PMR, they did brilliantly. That was over 10 years ago. Sounds like you are having a flare. I would increase the preds, and try to find a Dr. with some experience of people with PMR. My surgery is amazing, over the border in Somerset.
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