I am today feeling totally confused, frustrated and bewildered. Any advise would be greatly appreciated please.
My story in as brief as I can. I was diagnosed with PMR in October 2015. This was after 6 months of living in pain. Which had started with a virus that took 6 weeks to clear. Following this "virus" I had hip pain, neck and shoulder pain and thigh and buttock pain.
During this time I tried an osteopathic clinic as the GP had thought I had a frozen shoulder. Anyway obviously this didn't help and finally in pain and tears feeling like I was 110 years old at 48 yrs the GP decided with all my symptoms it was PMR.
After the first week of steroids I felt great by comparison. I was however always concerned about long term steroids so I did always hope to be drug free asap. Although the GP did advise normal time for PMR to run its course was 2 years.
It's not always been a smooth journey, I had a flare in December and also had high eye pressure which has been checked at 2 eye clinics and eyes are good.
Currently I was down to 8mg and recently experienced temple headaches.
So this is the part I needed to get to.....I went to the GP due to headaches keeping in mind GCA. My blood pressure was checked and I was told it was high, so was suggested this could be the reason for the headaches. It was agreed to monitor for a month each week.
So today I returned to see a locum doctor and she firstly took my bp and said it was high with the machine reader (165/100) , so she then said I like to use the manual reader. 2 readings and it was (140/90 - 139/90) so she said no concern there. We spoke about PMR and steroids and she basically has said why was you told you have PMR. She said my ESR was never above 20, I have no family history, I was on the young side and finally I've never seen a rheumatologist. Adding that she suggests I reduce as quickly as possible my pred. I was down to 8mg she said drop to 5mg now for 2 weeks then to 3mg for 2 weeks then 1mg to stop. All the things I've read not to do ???
Finally she said long term steroids cause lots of health problems and I am a very young patient to use long term steroids. Also would be referring my to a rheumatologist as was confused at my diagnosis.
To say I am feeling completely confused, worried that I have been incorrectly diagnosed is an understatement :(. Have I just seen a GP who doesn't recognise PMR ?
Written by
wooh66
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Woo, I'm not surprised you are feeling confused. For your GP to seemingly to dispute the fact that you have PMR for reasons that you are too young and have never had a raised ESR above 20 is the old chestnut we hear about all too often. One in 5 patients with PMR never have raised blood markers, and there are a fair number of people around who were diagnosed at around the same age as you. What she should have taken into account is how much better you felt after your initial starting dose, and also the fact that you had the fairly common experience of a flare after just a few months which, I'm assuming, you may have got under control again by raising the steroid dose for a while? What she should also have taken into account is that the temple headaches could point to lurking GCA, in which case the advice would be to increase the steroid dose rather than quickly come off it and stop as she has advised. I think you need that referral to a rheumatologist, and quickly if you still have that temple pain. Meanwhile you already will be aware of the need to watch out for any sudden changes in your vision and seek emergency advice at A&E if unsure.
This was the stand in GP as my GP who diagnosed me nearly 18 months ago is off due to a skiing accident.
I've also always been led to believe not all patients have raised ESR and ive also read that steroids can mask a true reading so blood results aren't an only indicator of what the condition may be doing at any given time.
My flare up wasn't until over a year later but yes increased steroids helped to make me feel better.
I mentioned my concern with the link of temple headaches to GCA but that fell on deaf ears !!. I was just given prescribed tablets for migraine.
My eyes I am not worried about as been fully checked out at the eye clinic recently.
It just feel like have I been living in some dream world for 18 months !!
As Celtic has already said, your age and lack of high readings is often used by GPs to dispute PMR, but your original doctor obviously had very good reasons to think you had it last year when he diagnosed it. And this seems to have been vindicated as you felt better once on the tablets, not sure what level you started at but I assume it was either 15mg or maybe 20mg. The trouble with starting at very high doses is that it can obliterate the pain caused by other illnesses, which is maybe what your stand-in GP thinks. The one good thing is that you have been referred to Rheumatologist, the bad thing is that she wants you to stop in the meanwhile.
If your headaches are GCA related, then the migraine tablets won't do anything for the pain, so you need to be aware of that. And don't be overconfident that your eyes are perfectly OK, it's the temporal artery, and, or the optic nerve that can be damaged by GCA not the eyes per se. So, again as Celtic says, any "eye" problems go to A&E.
Yes clearly my GP took.all my symptoms into account and I had no reason to disbelieve her.
Yes at 20mg to start and reduced slowly when I have felt ok. I am pleased in a way as at least I will now see a rheumatologist.
Thanks for the heads up on migraine tablets I will see what happens.
I had a full check of my eyes at the hospital eye clinic. Which I believe looked at everything. I had my eyes numbed and dye drops added and drops to enlarged the pupil. So I think that was a full mot !!
Hi wooh66,
I think an appt with a Rheumy is a great idea. My own experience is that other auto immune conditions can present with Polymyalgic symptoms and respond in a similar way to 15mg of prednisolone.
4 yrs down the line after presenting with " classic " PMR/GCA symptoms and being treated with prednisolone and various DMARDS it's only recently become clear that I have another Vasculitis variant and spondyloarthropathy. I made the decision to wean myself off prednisolone after 2 yrs as I knew I was never going to get a definitive diagnosis while prednisolone was masking things. In the end a CT/PET scan provided the evidence, I was a similar age to you when my symptoms first started, I am now being treated with a biologic drug called Infliximab and my symptoms are greatly improved.
I am not saying that you don't have PMR but in view of your age it's important to remain open minded. You should really have been referred to a Rheumatolgist at the start of your journey.
It can certainly be very confusing and complex. I still have problems with jaw claudication and have a dilated thoracic ascending aorta which is monitored ( a rare spondyloarthropathy / Behcets syndrome complication ).
I think they are realising more and more that patients don't fit into neat boxes and there are more overlaps and crossovers between different auto immune/ auto inflamatory conditions out there.
I am sure it's in the BSR guidelines for PMR/GCA than anyone under 50 with symptoms should have an onward referral as it's rare under that age. I saw multiple Consultants all over the UK before my diagnosis became more clear, I likened it to collecting pieces of a jigsaw which were eventually put together to make a whole!
I think what is most difficult is getting anyone to consider anything unusual! At any age. Especially if they might have to fund anything...
For 5 years all I got was "your bloods are normal" - despite the fact I could barely move for the entire morning. It was hinted strongly that it was depression - in fairness I had suffered burnout syndrome but that had never caused pain and stiffness at the start and was well past. One rheumatologist was quite cutting in her (incorrect) assessment it was OA and she did no imaging of any sort. The second rheumy denied it was PMR, wanted it to be one of the more complex things you mention, including spondyloarthropathy. Fifteen mg pred achieved a miracle in under 6 hours - hardly suggestive of not being PMR I think.
The latest recommendations for PMR are for referral for anyone under 60 in fact:
D, I find amusing: Treatment of PMR patients should aim for best care and must be based on a shared decision between the patient and the treating physician.
Probably - family history and raised bloods are of no importance. It probably wasn't recognised as PMR if there is a history. One in five have normal bloods and that is more likely in a "young" patient. And what has seeing a rheumatologist got to do with it? They aren't always very good at PMR either.
I wouldn't be in a hurry to wean off the pred too fast until either you see your "real" GP or a rheumy. That is far too fast for comfort of your adrenal glands after the time you've been on pred - but you know what to watch out for and you could try reducing a bit, 1mg at a time, every few weeks is fair at this level. Return of any of the symptoms should result in a trip to (preferably another) doctor.
The others have said it all. As Keyes said, it may NOT be PMR - but it could be and it could have been the precursor of GCA and you don't mess about with that.
I was given similar fast reduction instructions by Rheumatologist. Started at 20, no problem going to 15. Getting to 12.5 was agony-took three tries following her wait two weeks and try again plan. Then her plan was 2 weeks and 10, 2 weeks at 7.5, 2 weeks at 5, 2 weeks at 2.5 , and hold there or go off if I could. I got to 2.5 and could barely move. Went back to 10 on my own, and she then agreed to keep me there for several months-ended up being 7 months. Now she lets me handle my own reductions. I asked for 1 mg tablets to allow more flexibility. I've been steadily reducing since October 2015, .5 mg every 10-17 days. I'm at 6 mg now. So much is individualized and trial and error. This is a long road, but I take comfort in knowing it is a temporary condition for most. Hope you can find a doctor to work with you as a team with a common goal. This site is such a great support, especially to know others have experienced the same difficulties with symptoms, meds, reductions, doctors.
Thanks all for your comments and having slept on what I was told yesterday I am feeling that this GP doesn't know me or my history and also what she saw yesterday was not the person I was 18 months ago . So yes I look fit and healthy and maybe not like a classic PMR sufferer - but hey what's one of those !!.
Of course I have a slight underline concern that I could have been treated for the incorrect condition, however having said that there are also lots and lots of other conditions that are also treated with steroids so I could still have been given the same treatment just under a difference name for a diagnosis. I cant turn back the clock and say I haven't taken long term steroids so whats the use in worrying.
I will look forward to my rheumy apt and hopefully he/she wont be so head in the sand point of view on PMR.
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