Just got official dx of PMR.
Posted , 7 users are following.
Dealing with pain since mid Dec. At that time only shoulders. Had MRIs on both shoulders and showed many partial thickness tears in rotator cuffs and surrounding tissues. Sent to Orthopedist and got cortisone shots in both shoulders. Worked for about 2 1/2 weeks. Also have been on PT. I'm a very active 68 year old man, but my PC got suspicious and thought it might be PMR. He started me on 20mg pred and symptoms started getting relief pretty quickly. Just had confirming lab tests. Will be seeing a Rheumatologist at end of April. Tried tapering to 15mg but pain started returning, How long does it usually take before tapering can really begin?
2 likes, 13 replies
pat38625 ingo
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Also you need to take it easy because when you get pain relief through pred, you feel so much better and then (like me) tried to catch up on things, to my cost I may add. Try and pace yourself, you will get to know what works for you and what doesn't. Good luck on your journey. I would be lost without this formum so stick around, you really do get the best support, advice and information from these good caring people. Regards Pat
ingo pat38625
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MrsO-UK_Surrey ingo
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We can usually experience around a 75% improvement in our pain levels within a few days or even hours of the starting dose. However, that doesn't mean that the inflammation is under sufficient control to stabilise it. The steroids aren't curing anything - sadly there is no cure at present - they are just damping down the inflammation that causes the pain until PMR goes into remission when it is ready, and that can take anything up to 2 years for some and much longer for others.
The lab tests don't actually confirm PMR as both ESR and CRP can be raised due to a number of other condtions, including infections/viruses. However, the blood tests, along with your symptoms, can be used as a guide, if repeated before any planned reduction.
ingo MrsO-UK_Surrey
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Mrs.Mac-Canada ingo
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my advice would be to read as much as you can on this forum. PMR is very different for everyone but the experiences of the people hear have proven a life saver for me (or flare saver😋)
Slow and slower is the rule here when decreasing. If you yo-yo with flares you'll find it more and more difficult to get to the level that manages the inflammation.
Some doctors tend to want you to reduce to quickly. If you happen to have one of those please take him/them the Bristol plan. There is also other information available and I'm sure you will be given the links if you need them.
hope you have a Happy and pain free Easter.
Diana🌸
ingo Mrs.Mac-Canada
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Oregonjohn-UK ingo
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Best of luck, John
ingo Oregonjohn-UK
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Oregonjohn-UK ingo
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margaret22251 ingo
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ingo margaret22251
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margaret22251 ingo
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I now have started to think of my body as a machine, try to help or mend it where i can( idf a car needs oil put in oil etc)but i know we cannot treat our bodies the same, but i sure as hell am trying, never read so much about anti - inflamotary foods.
I thought i uesed look after myself, then something like this happens and i wish i had done more, maybe then this would not have happened, but we are all different and things break down.
Keep me informed, oh do you know you can but turmeric capsules, and i am sure i read some where that you have to be carefull with other medicines when you take turmeric, dont quote me on this, but i will see if i can find the article again. Good luck
EileenH ingo
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There are a load more links in there now Ingo - have a good read. There's a lot of really good info on the PMRGCAUK northeast site in particular, as well as patient stories - most of whom have now recovered. The Quick and Kirwan paper (Bristol paper) is good about management for your PC's reference, it's aimed at him.
A basic rule of reduction is never to try to reduce by more than 10% of the current dose at a time - so 2mgs now, 1.5 at 15mg and so on. Some people can't even manage that without their body protesting at the withdrawal and in the replies to that thread the link is for is a very slow reduction. It or something very similar is being used by a few rheumies in the UK and is being studied by a PMR reserach group in the north of England.
If you reduce and the pain starts immediately it is most likely steroid withdrawal discomfort which will then improve over the following days/weeks. A flare of the PMR may happen quickly but will get worse as time goes on. You need to get the symptoms well under control before thinking of reducing - Kirwan recommends 6 weeks and that is fairly standard amongst the good rheumies I think.
Oh - and be VERY careful with physiotherapy - repeated or sustained actions are poison in PMR. Your muscles are intolerant of acute exercise - they won't warn you you are doing too much and they will take far longer than usual to recover. If you exercise keep it in small amounts, take note of what you do that is OK or what is too much and learn to pace yourself. You will be able to do more - but build it up slowly and always have a rest day between doing things. You will manage more if you do 5 mins, rest, another 5 mins, rest (or something like that). I could ski 4 short runs with rests on the lift, I couldn't do a single longer run that was far less altogether - at the beginning of the season. But later in the season it was OK.