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
tina-uk_cwall wendy43316
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i would like to talk with you about your reduction. The 15mg dose is the standard starting dose for many of us. However, please look up the Bristol pmr plan, because you will see that most Drs would like to keep you on that dose for 6 weeks so that the preds can really do their job. Following that it's down to 12.5 for 6 weeks followed by 10mgs for anything up to a year. I was kept on 10mgs for 6 months.
from 10mgs many of us then like to follow the dead slow and almost stop reduction method with many of us only reducing by .5 mg per reduction.
what you definately do not want to do is reduce by too much too quickly. You could end up with a flare, which could see a return of your pmr symptoms as you are not taking enough preds to control the inflamation.
all the best, tina
wendy43316 tina-uk_cwall
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tina-uk_cwall wendy43316
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EileenH wendy43316
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However - if the headaches get worse do go back to the doctor and if you get any visual symptoms at all go straight to the doctor or - if you have to wait at all - go to A&E/the ER as that could be a sign of GCA, PMR's big brother. Other symptoms include pain in your jaw when chewing that goes away when you stop, scalp pain or tenderness and sometimes the ear problems you mention. About 1 in 6 patients who have PMR do go on to develop GCA so it is always something to bear in mind.
You'll find links to lots of information in other places here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Do come back and ask any questions you have. Someone will do their best to answer!
wendy43316 EileenH
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EileenH wendy43316
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If you go to the link I gave you you will find the Bristol reduction plan someone has mentioned as well as plenty of information about the signs and symptoms to watch out for.
The symptoms you are descriing all suggest that you weren't allowed to stay at the dose you started on long enough to clear out the existing inflammation. The other point is you are still having to work - and from experience we see that people who still have to work need a bit more to manage the symptoms. Unfortunately the average younger doctor hasn't a clue what going to work when you are ill feels like - they tend to assume everyone will be able to have sick leave like they could.
You really shouldn't need extra pain-killers and paracetamol usually doesn't make a lot of difference anyway - in PMR it is pred that is used to manage the pain which is due to the inflammation caused by the underlying autoimmune disorder.
Maybe you could discuss things with your GP? I don't hold out a lot of hope for you getting to speak to your rheuamtologist if you are in the UK. If you are somewhere else I suppose you might.
As for weight gain - avoid processed carbs like the plague! Many people have avoided weight gain/lost weight they had put on with pred by cutting carbs considerably.
ptolemy wendy43316
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wendy43316 ptolemy
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tina-uk_cwall wendy43316
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it is important to get the initially inflamation under control first and that takes time and 3 weeks is simply not nearly long enough.
your rheumatologist is asking you to reduce to 10mgs in 6 weeks when if you look up the Bristol pmr plan you will see that the experts recommend patients stay on the starting dose of 15mgs for 6 weeks.
also, I hope that any additional pain relief that you are taking does not consist of any anti inflammatories, that is ibuprofen. These drugs should not be taken along with prednisolone.
regards, tina
wendy43316 tina-uk_cwall
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tina-uk_cwall wendy43316
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wendy43316 tina-uk_cwall
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ptolemy wendy43316
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lodgerUK_NE wendy43316
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Where do you live?
wendy43316 lodgerUK_NE
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molly1957 wendy43316
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wendy43316 molly1957
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tina-uk_cwall wendy43316
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that is why this is a condition that we as patients need to understand it and our treatment plans inside out so that we along with our Drs treat this condition best, not having our treatment plans dictated to us. All the best, tina
molly1957 wendy43316
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