Consultant and GP don't agree with diagnosis!!!
Posted , 13 users are following.
I posted the other day that I have been ill for some time, 2+ years, and the relief GP actually diagnosed PMR just over 2 weeks ago, after 4 days of prednisolone 20 mg I had 80% relief plus of pain and she upped my dose to 30mg and I had my already arranged rheumatology appt this week, he says it isn't PMR as I'm 53 years of age and my ESR is 36 and was quite cross with the situation. On Friday he told me to reduce my dose immediately to 25 mg and see the GP as planned Wednesday.
Since Friday I have got the pains creeping back in across the shoulders the skin burning sensation I used to have, can anyone relate to this situation please.
I was elated in a way that the GP had helped my pain as I find working with it soooo difficult 12 hour shifts with no breaks most of the time 2 a week, even pacing myself if possible through them flattens me for days at home, that I can't do anything on my time off. Now I feel despondent again as I have pain on this reduction and the GP is leaving in August.
Has anyone any situations they know of similar, and what should I do?
0 likes, 28 replies
amkoffee adette01750
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adette01750 amkoffee
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EileenH adette01750
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Leeds - the rheumatology is at Chapel Allerton. One lady travels from Kent to see Sarah Mackie - who does a LOT of research in PMR/GCA and she's lovely.
adette01750 EileenH
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faye______00403 adette01750
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Unfortunately this is the same problem many with PMR have faced.
Just because you don't fit the age bracket doesn't mean you don't have
PMR.....the relief you felt from pred should be an indication to doctor that
you do have PMR.....I read on Mayo Clinic that sed rate for men should
be 0-29 and for women 0-22.....of course that is not cut in stone. There
always exceptions to every rule....36 seems high to me....(not a doc)
Another rheumy would be my first move.....
adette01750 faye______00403
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Anhaga adette01750
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I keep hearing that older people have highr readings but all that really tells me is that older people have more things wrong. When my doctor tried to reassure me that my ESR was in range "for my age" and I knew it was significantly higher than for a younger person I was concerned, but was delighted that three months later it was in fact down in the range for the younger person! She doesn't check CRP.
adette01750 Anhaga
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EileenH Anhaga
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You are spot on Anhaga - to compile a "normal range" you take readings from a large number of (apparently) "healthy" individuals of all ages. The chances are though that many of the over 50s probably have sub-clinical PMR or the like. Their readings will be high as a result. It isn't "normal" it is indicative of undiagnosed problems - and finally that has been realised. Any doctor who is working on figures of over 25 being normal is out-of-date.
tina-uk_cwall adette01750
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Adette, I cannot say if you have PMR or not but I was only 52 when I was diagnosd and despite what this rheumy says people in their 50's do develop the condition, just read articles online.
If your ESR was 36, that is still elevated because the normal range is 2-25mm/h so I don't understand that arguement.
As Amkoffee says could you not find a different rheumy because if this is his attitude and he hasn't even seen you, he clearly can't till an elevated ESR level and he is unaware that people in their 50's can develop the condition, perhaps he doesn't know much about the condition.
You say that since your reduction some of the pain is returning. Well that perhaps is the best diagnosis of PMR, however, I am not medically qualified so would hate to make a definate decision.
If you have been suffering from this trouble for 2+ years with no definate dianosis then you really should be referred to a specialist for further tests and if your GP's surgery has multiple GP's then perhaps a visit to one of them is an idea. They can look at this further development with new eyes and perhaps come up with an answer, but whjat is important is to let your GP know that following this reduction some of your old pain is returning. Good luck, Tina
adette01750 tina-uk_cwall
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jeanne333 adette01750
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The RA is wrong on all counts, the way he treated you and your age in relation to PMR, plus the fact that you was already on 30mg of pred, so it had effected your levels. I had a similar problem when I first started with my RA, except he was very nice. He hadn't delt with a lot of PMR cases, up till then. I told him about this site and passed on info I had received from it, now we are on the same page. Just be thankful that your GP seems to be informed and will help you. Hang in there and listen and apply the advice you received on this site.
EileenH adette01750
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I had a very similar situation. The first rheumy I saw when the PMR symptoms had relatively recently started almost sneered it was "just OA" (she was a colleague of my husband's so heaven knows how she dealt with Joe Public!) - of which there is no sign at all about 12 years on.
A few years later, after a real flare that absolutely flattened me, I had been online and worked out what it probably was - textbook PMR except for normal range ESR/CRP, the reason I'd been repeatedly told by the GP there couldn't be anything wrong. I was sent to a rheumy - who wanted it to be ANYTHING except PMR. He was particulalry keen on psoriatric arthritis despite no sign of psoriasis (may come later, in fairness) nor real joint problems and wanted to start me on sulphasalazine. Eight weeks earlier he'd condescended to give me 6 weeks of pred to get me through a trip to the USA. Six hours after taking 15mg I walked downstairs normally and back up with a cup of tea in my hand - something I hadn't been able to do for about 5 years. He wasn't interested.
A different GP, who had been on maternity leave on and off for the previous few years and only worked part-time anyway so I hadn't seen her, was convinced enough to continue to prescribe pred for me. Here my GP and the local medical consultant who has a special interest in PMR and GCA have never disputed my pretty classical PMR. Most of the time I get on with it on my own.
The lower age for PMR is now set at "over 50" in the international Guidelines. It it had been up to the patient representatives on the committee it would have been younger - we see patients on the forums all the time who are under 50 and a couple of the top PMR rheumies in the UK are perfectly accepting of under 50s with PMR as are several in the USA. As others have said - the accepted range for "normal" ESR is up to 20 nowadays, the 35-40 figure that used to be the criterion has been discarded. Anyway, one in five patients with PMR gave readings that are within that normal range. My "normal" is 4 - a reading of 36 would be very high for me.
I was going to suggest you go to your GP appointment and ask if they know of others in the practice who would manage you as having PMR. However, now I have read your first post (I didn't get a notification for some reason), I would suggest possibly seeking a second opinion but there is much more to be said.
You do have confirmed Sjogrens I gather - and it is very possible you have something else that is causing the PMR symptoms so I do have a bit of sympathy for the doctor's attitude - but he shouldn't rule out PMR on the basis he did, those facts are wrong, and he should have explained what he is thinking. PMR isn't the disease, PMR is the name given to the symptoms of an underlying illness and there are a lot to choose from, some of them potentially more unpleasant than PMR so it is improtant to get it right. Sjogren's itself can give rise to all the symptoms you have described if it is severe.
It is possible that he wants you off pred so he can see an unclouded picture - the pred can mask all sorts of things and he won't be able to do certain sorts of imaging and tests and get an accurate result. It's a shame really the GP put the dose up - the 80% improvement in 4 days is really very good and many people don't become totally pain-free, ever, however much pred they are put on. Something that responds that well to a moderate dose of pred is very possibly though not definitely PMR, if you are on a higher dose there are other things that could come into question. Unfortunately it isn't as simple as "It responds wonderfully to pred, it must be PMR" and there are no definitive tests for PMR. If only there were.
Did the rheumatologist say he would see you again in a few weeks once the steroid dose was reduced to a low level? If he did, then really I think you should do as he says - let him see you in a ll the glory of your illness and then he can do the detective work to identify what it really is. I know the thought of struggling with the pain and stiffness again is daunting - but unless you can find a compassionate and communicative rheumy there isn't much option I don't think and anyway, they may feel the same way.
Whereabouts are you?
adette01750 EileenH
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the rheumy has seen me for 2years with my increasing pain, lack of movement, initial diagnosis was polyarthritis, osteopenia, right hip bursitis, had done loads of scans up to now and bloods, told me to go away withe paracetamol and ibuprofen and injected my hip twice, only 4 weeks rest bite re pain.
my ESR was 76 (2 months ago) the result I gave you was the latest PRE STEROID COMMENCEMENT, up to these two results I had been 0.
I am in Yorkshire.
thank you again, will talk to GP but she leaves end of August.
EileenH adette01750
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adette01750 EileenH
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Brilliant can't thank you enough.