I am now not sure...about anything,,?

Hi guys, I wrote about 3 weeks ago when my doctor had diagnosed me with polymyagia. ( crt at 122), and got advice from you as to the whole prednisone thing..now 2 weeks on, have been on 15mgs, and no difference at all, ( in fact way worse at night).. The doctor had referred me to a rheumatologist, but I got a call this morning to urgently see the doctor and have more blood tests, as the rheumatologist doesnt agree with the diagnosis (havent even seen them, )( I only have pain from waist down), and now wants me to to have more X-rays and another MRI. My doctor has told me that she is saying ( on advice from rheumatologist) that there is a high cancer risk, so that I am able to be seen more quickly from local hospital ( although she has reassures me that cancer is the last issue that she thinks is going on).. I live in New Zealand, so although we have a free health care system, if they can exclude you, they will , there is is only so much money to go around I guess :) But doctr has now told me to start tapering off prednisone, so I am left wondering...WTF? Has anyone else has a mis- diagnosis.. I am starting to feel a tad bewildered and hoping that someone can eventually get to the bottom of this ongoing pain crap :(

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  • Hi and welcome to the other club of 'many diagnosis and still no clue' that no one wants to join!

    It's very frustrating and I think the majority of us here have not had an easy ride when it comes to formal diagnosis. Autoimmune disease is notoriously difficult to diagnose and with PMR/GCA there is no definitive test (I'm sure the Aunties will correct me if I'm wrong) which makes it even harder. Also it seems here in the UK at least that there is not a great deal of awareness or knowledge even within the Rheumatology field unless you search out those that have special interest.

    Being told what it isn't however, doesn't seem to be a problem - my issue is my ESR and CRP markers are not raised and my age is also causing confusion (46) and so some will just point blank refuse to accept it could be PMR/GCA. I have also had the CT scans, bloods etc to exclude cancer. However all my symptoms point to PMR with a large vessel GCA overlap but it's still currently in question.

    I'm guessing (and it's a big one) is that they want you to reduce your steroids so they can see what your bloods are doing without the meds skewing the results?

    Not much help I'm afraid but just wanted you to know you are not alone, it feels very despairing to be given so much conflicting information.

    Not to mention trying to explain to others what you have wrong with you when even the medics don't know is equally frustrating. Does anyone else get bored of talking about it and trying to explain it!??

    Hopefully you will get better advice from the more experienced friends here and the additional medical tests will get you on the right track soon. I've found the only way to make any sense of this is to educate yourself with as much information as you can and make sure you can back it up with evidence at your appointments!

    Sending hugs 💐🌷

  • Hi anicholson,

    So sorry to hear your trials. If Pred did nothing for you then it's probably not PMR, so obviously more tests needed.

    You are not the first, nor I suspect the last, to be mis-diagnosed - early stage symptoms of PMR and high CRP readings can be very similar to other diseases, but usually other things are ruled out first, which is why many get a late diagnosis of PMR.

    Hopefully the taper off Pred won't be too horrible, but I doubt it will be very pleasant, not really what you want with everything else going on.

    Can't really offer any advice as to what it could be, but hopefully with more tests in the pipeline you soon get a definitive diagnosis.

    Best wishes.

  • Hi anicholson,

    Sorry to hear that you are in a state of flux. The 'unknown' is the worst stage in my book, so I really empathise.

    Can't help on the 'medical front' but thought it was worth a mention, by way of reassurance, that my GP was 'thrown' because, like you, all of my symptoms were below the waist initially. Also my bloods, unlike yours, were showing no inflammation at the time. So he explored the 'other possibilities', before diagnosing PMR when symptoms progressed to above the waist. The 'other possibilities' included scans , X-rays etc so it seems your team are just working the other way round to mine. The tests they are suggesting do seem familiar and fairly routine on the exploration front.

    Clearly your doc (and the 'unknown Rheumy) have your best interests at heart using the suggestion of the big 'C' as a means to speed up the process for you. (Wish mine were as thoughtful). I would take your doctor at his / her word, no point aggravating your symptoms stressing unnecessarily. (easier said then done). Though, despite my lack of experience and medical knowledge, I have to say blood results I am a bit surprised doc is tapering rather than trying increased pred dose first since your results suggest a high level of inflammation. However the reason the doc may have chosen this may be because pred can skew test results? Did he give a further explanation as to his decision on the tapering front?

    Hopefully you will soon have a definitive diagnosis that can then be managed / treated so that life becomes more comfortable for you.

    Keep us posted. Thinking of you.

  • About 1 in 6 patients originally told they have PMR/GCA later have the diagnosis revised, very often to LORA (late onset RA) as they can present almost identically but also to other things. PMR is what is called a diagnosis of exclusion - you exclude all the other options which can mostly be proven, and then you are left with PMR. The trouble is - a lot of GPs jump to a conclusion (if they come to one at all) without doing the exclusion and since there is no definitive test for PMR it is likely quite a few mis-diagnoses are made.

    I suspect the panic is because of the very high CRP - it really is unusual to get very high levels in "just" PMR although it does happen. Before panicking I'm surprised they didn't try a bit higher level of pred, 15mg is the bottom of the starting dose range and there are a few reasons for needing more to get an effect so they suggest trying up to 25mg - and that extra bit can make a BIG difference.

    The fact your pain is worse at night does suggest something else - but it is difficult to say without all the evidence. The request to reduce pred will be so that they can see your symptoms in all their glory and if it isn't working there isn't a lot of point being on it anyway. Depending on the sort of MRI they have chosen to do they need you on a lower dose, preferably none. And this soon it is easy to do. You can probably go down 5mg at a time - I did after 2 weeks of 15mg and had no problems at all.

    Do let us know what they decide it is.

  • Hi,

    Not sure if this will help, but, having just read pmrpro's reply, I should say that I was started on 20mg for PMR, but, after three days my GP put me up to 30mg to get the pain under control. That might seem a bit drastic, but it certainly worked for me. That was two and a half years ago.

    Clearly, you will need to speak again with your doctor.

    Good luck

    Paddy

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