I was diagnosed with polymyalgia 3 weeks ago
Posted , 11 users are following.
i have been taking 15 mg ofpred, for 2 weeks ,then down to12.5 ,I've got ringing in my ears ,hot sweats and headaches .has any one else had any of these symptoms ,
0 likes, 58 replies
gwenda88692 wendy43316
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tina-uk_cwall gwenda88692
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think about your quicker than normal reduction to 12.5mgs. You last thing you want is a flare which will only see you back up to 15mgs again anyway. Regards tina
gwenda88692 tina-uk_cwall
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EileenH gwenda88692
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Otherwise, definitely go to your doctor on Monday morning and insist on being seen quickly - same day and preferably NOW. Tell him about the constant headache and increasing PMR symptoms. It may be that you reduced too soon - but it could equally well be GCA which requires a far higher dose of pred to control.
EileenH gwenda88692
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As an extension to my other post - if your GP won't take you seriously about the headache - go to A&E anyway where you hopefully will find someone who will. Not guaranteed but one can always hope. As a final hope - go to an optician. Not one who just tests for dispensing glasses but an optometrist who can examine the back of your eye and see if there is anything to be seen of reduced blood flow to the optic nerve.
tina-uk_cwall gwenda88692
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wendy43316 gwenda88692
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tina-uk_cwall wendy43316
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EileenH wendy43316
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I know it sounds hard - but that 's the way it is when you have any autoimmune disorder, you have to learn to pace yourself and rest adequately.
Google "The Spoon Theory by Christina Miseriando" tp get an allegory of what you have to bear in mind when arranging your life.
wendy43316 tina-uk_cwall
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EileenH wendy43316
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https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and download the "Bristol paper".
They recommend remaining at the starting dose of 15mg for 6 weeks. They require an improvement of 70% overall in symptoms to pretty much confirm this is likely to be PMR and it sounds as if you managed about that. You just reduced too soon before all the existing inflammation was cleared out. If you reduce further you are likely to have problems getting the flare under control - so, persuade your GP to at least provide enough pred for you to stay at 15mg for the next 3 weeks. It isn't long - but long enough to be back where you were if you reduce to 10mg.
tina-uk_cwall wendy43316
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wendy43316 tina-uk_cwall
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ptolemy wendy43316
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ptolemy
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wendy43316 ptolemy
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lodgerUK_NE wendy43316
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Some people, and there are quite a few, never ever have raised markers at all.
ESR and CRP are guidelines and guidelines only to the fact that something is going on, you then have to find out what is going on, they can be raised with a kidney infection, a cold, flu et al. They are not exclusive to either PMR and/or GCA.
If you are in pain, go back to where you felt comfortable and wait for at least a week and then try a drop of no more than 10% (do the math) and then sit at that dose for at least a month. There are two reductions plans, available free of charge. Follow this link and then go to the northeast website and email them.
http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316
I could clatter some GP's and Rheumys. Sometimes I feel really nasty and just wish they could experience it for at least 3 months and see how they cope.
There is no known cause or cure, the aim is to get you to be as comfortable and as pain free as possible until it decides when to go into remission. To enable you enjoy some quality of life.
ptolemy wendy43316
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wendy43316 ptolemy
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lodgerUK_NE wendy43316
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EileenH wendy43316
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As the others have said - they measured it at 15mg - that doesn't mean it is still falling. And anyway, it is the symptoms that matter. If the doctors were less fixated on numbers and looked at the patient they would do so much better in diagnosing and managing people with PMR.
I know you are confused - but all YOU need to do at present is go and tell your GP that the pain is coming back and you would like a bit longer at 15mg until you see the rheumatologist. Although it has to be said - if 15mg helped a lot and (at present) less doesn't and you get even worse at 10mg then the rheumatologist is being faced with a fair level of evidence! Trouble is, you have to bear it for the next 3 weeks.