Hello everyone, well the good news is that the consultant at the Acute Emergency unit told me that nothing significant showed up on my scan (phew). Since starting on steroids on 28th October:
1) My appetite has returned (know this is due to the steroids driving my food cravings)
2) Have some slight pain returning in my right hip at night
3) I still have mild back pain in the middle of my back on either side of my spine (it just feels like the 'volume' has been turned down')
4) I have a weird breathlessness thing going on where every now and again I take a sharp intake of breath spasmodically
5) 70% improvement in my pain and 80% improvement in my mobility although it still hurts to lie on my back
6) I still get very tight hard shoulders although they have been fine for the last few days!
Stupid stupid me forgot to tell the consultant about the back pain and shoulders and that it still hurts to lie on my back!!!! This consultant is not sure if I am PMR and wanted to take me off steroids immediately which filled me with horror. The thought of returning to alI that pain. He then said that I knew my body best and to reduce by 5g a week every week under the guidance of my GP and recommended I be referred to a Rheumy. I saw my GP later this afternoon and he is carrying out more blood test this week to check my ESR reading. I also asked him about B12, folate & ferretin as advised on this forum. I am seeing him again to check on the blood results and my reduced steroids. The previous consultant I saw at the hospital before the scan and steroids felt it was 90% certain I had PMR and my gut feeling is that I do too.
Thank you all.
Written by
PMRMiltonkeynes
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Well - that is good news but what a shame this doctor didn't think the same as the A&E one! If he didn't think it is PMR - what exactly was he going to suggest it was?
Your description of the response to pred is absolutely typical of someone with PMR so if I were you I'd be back at your GP who sent you to A&E in the first place - didn't he suspect PMR? I also wouldn't reduce by 5mg at a time every week until you have discussed it with the GP - that will just put you back where you were once you get a bit lower and it is PMR. If you follow this link
to a post on another PMR forum, you will find a load of links to sources of approved information on PMR, the websites are reliable PMR/GCA support charity sites. About 2/3 of the way down the list is a link to a paper under the heading "Bristol paper" written by rheumatologists but aimed at GPs to help them diagnose and manage straightforward PMR on their own without the patient having to wait for a hospital appointment with a rheumy - which in some places can take months. Take it to your GP and ask them to read it and consider managing you themself if they are a bit reluctant.
Funny - a few people recently have mentioned the feeling they need an extra breath every so often. When I think about it, I did too in the earlier days of PMR but I think it stopped after I was finally given pred. I think it must be something to do with the muscles not getting the amount of oxygen they need to function properly and sending signals to breath harder. I also got terribly out of breath climbing the stairs!
The hip pain could well be bursitis - which also can be part of PMR - and I found it took some time for that to fade but suddenly after about 6 months I suddenly realised my hips didn't hurt at all. The back pain I had was also like you describe but it wasn't so much the PMR as something called myofascial pain syndrome which often does happen along PMR and it is caused by the same inflammatory substances. I was lucky and the doctor at the pain clinic here in Italy used cortisone and muscle relaxant injections as well as manual mobilisation of the trigger points. Before I came to live here and now instead of the pain clinic I used Bowen therapy to relieve it - quite a few others have found it has helped with these extra bits that aren't directly PMR so it really is worth giving a try. If it hasn't made at least some difference after 3 sessions it probably won't so it isn't an open-ended commitment. The big advantage is that, although you have to pay for it yourself, it doesn't require persuading a doctor to refer you anywhere.
Good luck with your GP.
Hi,
I am not saying that you don't have PMR but you may find my story interesting.
I was 46 when I developed bilateral hip and shoulder pain and stiffness, fatigue weight loss and anaemia. This was followed by pain in my thoracic and lumber spine.
Eventually after 10 months I had a trial of prednisolone 15mg which got me mobile again and reduced the pain significantly. 10 days later I awoke one morning with blurry vision and the worst headache ever, later that day I developed jaw claudication and was treated with high dose steroids.
3 yrs down the line it is now apparent that my diagnosis is spondyloarthropathy with a touch of Behcets syndrome ( a rare type of Vasculitis ). After 3 yrs of misery I am to have a trial of anti TNF's which I hope will work wonders!
The reason I am posting this is that ankylosing spondylitis / spondyloarthropathy occasionally appears with PMR type symptoms. Although they don't use prednisolone to treat it ( because of the risk of oesteoporosis of the spine ) it does respond to prednisolone. It can also present with mainly peripheral disease ( hips, shoulders etc ) which are more painful than the spinal disease and it doesn't show up well on CT scans ( MRI is imaging of choice ).
Although spondyloarthropathy was suggested early on in my illness it took a positive HLA B27 blood test ( the gene associated with spondyloarthropathy ) and a CT/ PET scan showing widespread enthesisitis for Consultants to start taking me seriously. There is one other person I know of on here who was treated for PMR when they actually had ankylosing spondylitis.
I do think it's worthwhile to fully explore your back pain with your Rheumy. CRP and ESR are often not raised in spondyloarthropathy either!
Hmm - that was one of the things my really rather unhelpful rheumy wanted me to have rather than PMR at the first appointment. I'm not sure what he tested for - I had the proverbial armful of blood removed - but it was never mentioned at the second visit (neither was anything else of any use!).
I assume I would know if I was hatching something rather less easy to deal with than PMR?
It's difficult to say. To be honest it took me weaning myself off pred ( it took 2 years ) and putting up with a whole load of pain and stiffness again for the diagnosis to become apparent. Prednisolone effectively masks many things.
My inflamatory markers are starting to climb slowly again. The one thing about Spondyloarthropathy is that it responds to exercise, I definitely feel more stiff and sore if I don't have my daily walk. Also the pain worsens at night, particularly the second part of the night.
Apparently women get much more peripheral disease and men get the classic sacroillitis. I have a dilated thoracic ascending aorta as well ( which is growing, albeit slowly ) and the suggestion of some inflammation in the aortic root on CT/PET.
Spondyloarthropathy can take years to diagnose as its sero negative and has no auto antibodies associated with it, 10 years and over sometimes.
I realise my case is somewhat " complex " but I do think it's something worth keeping in mind as a differential diagnosis.
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