Vasculitis UK
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GCA and pmr

Need some advice !

I have been on prendisone for 8 mths . I'm down to 9 ml daily .

My question is Should prendisone be controlling the pain in the shoulders which I assume is Pmr .

Always worse in the am and treat it with 2 Tylenol on rising .

Supposed to reduce prendisone to 8 ml in a few weeks .

Not sure what symptoms I should watch out for from a flare .

Appreciate some feedback .

4 Replies

A flare is a return of the PMR symptoms. If the pain in your shoulders is the same as when the PMR started, and it was controlled by the starting dose then it should still be similar in intensity. You have got to 9mg reasonably well compared with many people. Did your original starting dose control all the pain? Or - the other way round, is your current level of pain MORE than what you had on your starting dose?

The aim is to get all the existing inflammation pretty much under control with the starting dose. If it applies, the blood markers should have fallen and be stable and the symptoms have improved and also be stable. Then you start to reduce in small steps to find the lowest dose that gives you the same result that you got to start with. It may not be total freedom from pain but it shouldn't be worse than that. It may be that you get to 9mg now but 8mg is too far and symptoms start to increase - that doesn't mean you won't get lower, it just means you may not get lower just now. Below 10mg you perhaps need to reduce in even smaller steps - perhaps 1/2mg instead of 1mg or using the "Dead slow and nearly stop" approach you'll find a description of here:

10mg often seems to pose a problem - as can 7mg. No-one really knows why, it just is so. One group of rheumatologists wrote a paper where they recommended sticking at 10mg for a year before reducing further - doing so, they found, reduced the rate of flares from 3 in 5 to 1 in 5, which is a lot. Quite a lot of people on various forums have tried the dead slow approach and got to lower doses than ever before - is is now being looked at in a clinical study in the north of England.

Something called myofascial pain syndrome can cause shoulder pain and is very often found alongside PMR. It is caused by the same inflammatory substances as PMR (cytokines) but they are concentrated in trigger points which are in pairs on either side of the spine: in the shoulders, about waist level and in the low back. They form hard knots of muscle fibres which can irritate nerves and lead to referred pain - the shoulder ones in the shoulders, upper arms and up the neck. They can be dealt with in various ways including local cortisone and muscle relaxant injections, manual mobilisation of the trigger points by a sports massage therapist or physiotherapist and also some people benefit from a technique called Bowen therapy - and that is what I have used for some years. It kept me upright in the 5 years the PMR wasn't recognised. It took away the "add-ons" and that left just the overall nagging pains we all know about. Now it means I get away with a bit less pred - because myofascial pain syndrome responds to higher doses of pred which have some effects on the cytokines in the trigger points but resurfaces as the dose reduces. It has worked for me and a lot of others to get rid of spasmed muscles - anything less in PMR is a boon I believe!

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Thank you so much for you reply . I was diagnosed with temporal arteritis after suffering two solid weeks of headaches . ( confirmed with a biopsy )

The prendisone 50 mg stopped it overnight .

The pain in the shoulder blades is new , over the last few weeks so I am assuming PMR which seems to go with GCA .

I need to know if the prendisone should be controlling this daily pain .

Appreciate your reply !

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Possibly PMR - but when you mention the shoulder blades it sounds even more like this myofascial pain syndrome. If you have access to a sports massage or Bowen therapist I really would ask them for advice - you don't have a lot to lose! Bowen in particular can feel like a spa treatment! Very relaxing even if it doesn't 100% work on your shoulder blade problem. That was the position of the most irritating pain I had - like a permanent tingling sensation unless my back was very firmly supported on pillows or the back of a chair. It really did drive me up the wall!

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Thank you so much for that . I will check it out .

This site has given me so much good info . Doctors are so rushed when one goes in with questions .

What would we do without the internet !! Thanks again 😊

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