What to do about my rheumatologist?

Hi everyone, I'm new to health unlocked and hope you guys can help. I've had the symptoms for a year and a half now but I'm going crazy trying to convince my rheumatologist to agree with me.

In January this year I was signed off by my rheumatologist saying that she thought all my classic PMR symptoms were not due to PMR but stress! That was stressful enough I itself!

I then went to my GP saying I was unhappy about this and he said that as there was no inflammatory indications in my blood tests, I was a mystery but suggested I try a quick dose of Prednisolone (20mg). Miracle cure within 24 hours. So agreed I should stay on them for now but wanted me to go back to rheumy for second opinion.

However my rheumy was not convinced PMR as she says I am too young (55). So sent me for an MRI scan to see if I had arthritis in my ligaments. The MRI came back negative- no arthritis to be seen. But my rheumy was still not convinced I have PMR as she reminded me, I am too young I spite of me telling her about others I know who are round about the same age.

She wants me to reduce the preds down to 5mg and then go on some alternative medication for arthritis. I'm currently on 10mg and she wants me to reduce by 1 mg per month until I get to 5 mg and then go on this arthritis medication.

This doesn't seem right to me. Why am I too young at 55? I don't have any confidence in her ability and have got more info and sense from the PMRGCAUK web site.

What should I do?

25 Replies

  • It sounds like you have got PMR with the miracle improvement. Twenty per cent or so of people do not have increased inflammation markers and even the medical text books say you can have PMR if you are over fifty, although even younger people get it and have the same problem battling with rheumatologists. Are you still without pain? Do you know what the arthritis medication is called?

  • Thank you piglette for your reply. Yes, on 10mg of Prednisolone and completely pain free. The arthritis meds that my rheumy has suggested are Sulfasalazine. Think I'll stay on the preds for now.

  • I've just been diagnosed at 57. But there are the responses from a poll on this on the Polls tab on this site which back up that people under 50 are getting it.

  • Hi

    I'm new to this and don't know what to suggest help wise, except to say I'm male and 57 - diagnosed PMR March 2016 and GCA last week!

    I'm sure others with more experience will also be in touch.

    Wishing you all the best


  • Hello Fran, I cannot say if you have PMR or not but I was 52 when I was diagnosed by a rheumatolist. Luckily for me my esr and crp levels were raised and within 3 hours of my first dose of preds I was practically pain free and able to move, so all this helped confirm the diagnosis.

    Did you respond to preds within a very short time span and approx how much pain and stiffness did the first dose of preds elevate?

    If the MRI scan has negative to arthritis why is your rheumatolist proposing to put you on arthritic drugs?

    I would not want to be prescribed and take any drug that was not not required or recommended by a positive confirmation of a medical condition.

    It seems odd that she is unwilling to diagnose PMR on the grounds that you are too young, which by the way is factually and clinically incorrect, yet she wants to prescribe arthritis medication without a diagnosis?

    What to do? Go back to your GP and discuss this situation.

    I wish you all the best, tina

  • Hi Tina

    Thank you for your reply. It has helped. You are so right, why would I take medication for something that I haven't got, I.e. Arthritis?

    I responded to Prednisolone within 8 hours when the pain in my legs and thighs completely went and then the pain in my neck, shoulders and arms went within 24 hours.

    You have given me good advice. I will go back to my GP.

    All the best to you.

  • Hello Fran, the lessening to pain and stiffness with your first dose of preds is by any standard, brilliant and a patients response to their first dose of preds IS a factor used by clinicians when diagnosing PMR.

    Please go back a chat with your GP.

    Regards, tina

  • Hey Fran"' just hang on for a wee bit, the experts will be hitting the keys any time. I know they will load you up with educational ammo to take to your Rheumy. This PMR is such a weasel of a disorder that lots of docs haven't actually worked with real live PMR patients. Goodie!! You get to be teacher here. Don't give up,, and don't let the docs put u off. Prednisone is a miracle here, And u need it.

    Good luck, we'll be watching for your updates. Jerri

  • Hi Jerri

    Thank you for your encouragement. I'll keep you posted.😀

  • Hi fran I'm no expert on this but definitely better informed since joining this group in April. What I do know is people here know far more than many medical professionals who don't specialise in PMR. My symptoms started this year just before my 51st birthday so I'm a few years younger than you. I will leave the rest of the advice to the experts. Good luck with it all you're in good company here!

  • Thank you Lucy for encouraging me.😀

  • Hi Lucy54 - I couldn't agree more with your comment re many people on this site are better educated and informed on the intricacies of PMR as opposed to many med professionals - sad but oh so true & hopefully very soon I pray this may change.

    I am one of two patients my GP has..........................

  • Hi Fran, I got PMR at 52, 4 years ago, but it took 2 years to get a proper diagnosis, due to my age and not having typical symptoms. Luckily I found a Rheumy who would give me Pred. after about 9 months but he refused to make a clear diagnosis. My way to manage this was to seek out the best Rheumy I could. I am now on my 4th Rheumy and very happy with his expertise and way of talking to me and supporting me. I am just in the process of trying to get an earlier appt. with him because I am flaring and my OA knees which have developed since the PMR are extremely painful.

    The way I finally got diagnosed was through a PET scan while I was consulting the PMRGCAUK"s president, Prof. Dasgupta- he really didn't think I had PMR, but did more tests where it was revealed! So, even the real experts struggle with diagnosis.

    I know from this experience how important it is for us to get a proper diagnosis if we can because then we know where we are at least and when things go wrong, we can interpret them properly.

    We patients need ago be as proactive as we can and take responsibility for getting what we need!

    Good Luck!

  • Thank you so much Suzy for your advice. Interestingly, she wants me to go to a meeting with other rheumatologist and present my symptoms so that they can discuss it together. So we shall see.

  • You aren't - the international guidelines say over 50. We know younger patients get it but that's the next battle with some rheumies.

    Change your rheumy.

  • Thank you. I think I will.

  • I'm only 50 years old and have been told I have PMR but they did say it was unusual at my age.

  • It's extraordinary how many people seem to have all the classic symptoms of PMR, including a rapid positive response to prednisone treatment, and yet are told they can't possibly have PMR because they are too young. So what do doctors call the disease manifesting exactly like PMR in patients under the age of 50?

  • They are very often labelled as fibromyalgia, CFS/ME, depression, menopausal, somatism (which is just another label for depression for many doctors) or - (and probably most common) "Your bloods are normal so there can't be anything wrong"! Even from some rheumies...

  • Thank you, you've just made a really good point which I shall remember when I next see her.

  • I was diagnosed at 54 and did have the inflammatory markers. However I had a flare up a few months ago, (may even be as much as a year as my short term memory is failing) and although it was a really nasty flare there were no markers whatsoever. I am still tapering and during this I have shown a couple of markers, but they have been very small

  • Hello sorry to hear about your health professionals know what they are doing but everyone deals differently with pain and medications and treatments. You have to find what is appropriate for you with your professionals . This condition is a very tricky my sister 60 years is in pain all the time. She sees a physiotherapist for gentle exercices and have sessions of waves of electricity in the shoulders and each goes to special thermal spa with mud treatment swimming is also good and sun, sorry I did not answer your question. keep trying and also looking for others things to manage your pain good luck

    There is no age to suffer from this condition but I am not a doctor


  • Hi,

    I'm currently experiencing the same problem exactly and tried Pred. before but it's quite frustrating. I'm loosing my vision on my right eye and tired no one is believing in me, I haven't got much time to type now but I'll see what I can do. Thanks for sharing your experience, it means a lot and that I'm not experiencing the same thing alone.



  • There is plenty of proof on here that younger people get PMR. I had a battle to get a confirmed diagnosis, I had just turned 49 when I got ill and it took ver a year to get diagnosed despite an osteopath diagnosing it immediately!

    I eventually requested a second opinion following a traumatic appointment with my first rheumatologist and was started on steroid treatment immediately and the results were amazing. The second rheumatologist did suggest I may also have fibromyalgia and initially discounted as my response to pred was so good, I returned back to the NHS following diagnosis and to third rheumatologist who is great and did confirm a secondary fibromyalgia (many symptoms are similar) about a year later. Starting treatment for the fibromyalgia really helped manage my decreases of pred more effectively.

    Hopefully a second opinion will help but also ask regarding a secondary diagnosis that may be muddying the waters.

    Good luck xx

  • I am 39

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