Pmr

[Jeanmh]

What is pmr and how do you get it please my niece suffers badly with pain in the back hips and feet but doesn't get to what is coarse ing it she is in her fifties She is always at Drs but not found out what the course is

[HeronNS]

PMR is an autoimmune inflammatory disease which causes pain and a stiffness not unlike what you get when you exercise too much, only it is worse and never goes away. Does she have trouble doing some normal everyday things? I used to have trouble getting out of bed in the morning, climbing into and out of the bath, doing up my bra at the back, that kind of thing. I can remember being on the floor to do my daily exercises (yes, I still struggled to do them) and sometimes it was half an hour before I could get up off the floor. I think these are common symptoms of PMR. No one knows what causes it. It is diagnosed by blood tests to find out if there is inflammation in the body (but these tests often do not show anything) and by a few days of a steroid medication. If the pain goes away quickly with the medication that is a good indication, not proof, that the problem is PMR (polymyalgia rheumatica).

Another thing which might be causing your daughter's problems could be trouble with spasmed muscles in her back. This might mean a visit to a physiotherapist might be useful. Although you'd think a doctor would have thought of this possibility.

[Jeanmh in reply to HeronNS]

Thank you I will get in touch with her and ask her what it's really like the pain I know she had a back opp but still as a lot of problems thank you kindly

[alice1940]

It feels like a really bad case of flu that no amount of medicine helps no energy and unable to lift arms up hope this helps Alice x

[Chihuahua1]

As HeronNS says, it is an autoimmune disease. There is no real diagnosis. It is true that blood tests are done to see if ESR and CPR are raised, although they don't always show a rise. It is often described by doctors as the body attacking its own large muscles. The only way they "diagnose" it, is by process of elimination. If, after doing all the tests for what is causing the pain there is no result, then it is assumed that you have PMR and this is confirmed if when you are put on a course of steroids (prednisolone) the pain is relieved of stops completely, only to return if you are subsequently taken off them after a short course. There is no cure, only control and remission, which means it can recur and may do so in a different part of the body. You have to pace yourself each and every day, because if you do too much one day, (thinking you are feeling better and want to take advantage}, you will suffer like crazy the following day.

[DorsetLady PMRGCAuk volunteer]

Hi Jean

This is what I send to new patients, hopefully it may help you and your niece to decide whether it is PMR. Do suggest you read up on it a bit more if you can before you go back to doctor.

PMR or GCA is not like most illnesses, take a course of tablets for a few weeks or months and it's cured. There is no cure, but the inflammation caused by the underlying illness can be controlled.

Lots of us are never sure what caused the underlying conditions of GCA and PMR, but having them means that your immune system is not working properly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessels and means that the blood and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiff muscles and fatigue.

The only thing that control that inflammation is Pred, it does not cure the problem, but it keeps it under control. Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes a lot longer. The initial high dose takes control of things, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works.

However, whilst we are reducing Pred (because you don't want to take more than necessary) you have to ensure you are taking enough.

The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not! As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have no return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.

If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg. Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg

Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am, so some people take their Pred around 2am so that by the time it is fully in their system (about an hour or two) it's ready to fight the inflammation.

Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.

There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Rheumatology site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.

You do have to do your bit as well though, just because you feel better, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as pre PMR, so when you exercise - gentle, Pilates, yoga, Tai Chi all good, no strenuous workouts! You need to let your muscle recover, and that takes longer.

Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.

Look up 'Spoons Theory on web, (Butyoudontlookill) it's not about PMR but it will give you an insight into how to adjust your lifestyle.

Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help

[PMRpro Ambassador]

Nothing to add to what the others have said except to say that the muscle aspect mentioned is an important one - something called myofascial pain syndrome could cause all that and has she been referred to a rheumatologist? Is the back pain all the time or worse at any point?

[Js94947]

Many times there can be a genetic background somewhere in your family. GCA and PMR they think are one in the same.