What emphasis should I place on my ESR count ever... - PMRGCAuk
What emphasis should I place on my ESR count every month? If it is below 8 I consider myself in good condition for the time.
It all depends where it has been in the past really. If it was raised when you were first diagnosed with PMR then it will probably go back up if you have a flare - but not necessarily. It can also go up from your "normal" if you have a viral or other infection, even a common cold can do it but a urinary tract, upper respiratory tract or kidney infection all often cause a higher ESR reading - even a very high reading.
All the ESR can tell you is that there is inflammation present somewhere in the body. It is very non-specific and any doctor who tells you "your blood tests confirm you have PMR" is talking rubbish. If a patient turns up with the typical symptoms of PMR it can be due to a lot of different things - some nastier than others and really other tests must be done too. A raised ESR or CRP show the doctor there is inflammation present and increases the likelihood it is PMR rather than a muscle strain or a few other things.
A diagnosis of PMR should always be made on the basis of things being ruled out and the symptoms. A final "cherry" on the cake in simple PMR is that the symptoms should improve by about 70% within 24 to 48 hours in response to a trial of 15mg/day pred - they don't have to go totally but should be much much better and return as fast as they went if you stop the pred.
However - about 1 in 6 patients with PMR (and GCA in fact) don't ever have a raised ESR or CRP, although there are fewer whose CRP isn't raised. I have never had a raised level of either, even when I was really ill and could barely get out of bed or walk. The symptoms improved in 6 hours though!
As a final confusing factor, in some patients the ESR may be high at first, fall when put on pred - but not go back up if there is a flare. There is often a delay between the symptoms appearing and the blood tests going up. And some people have a bout of PMR with high blood levels, go into remission but then have a relapse - but the ESR doesn't do what it did the first time.
So - the simple answer to your question: take more notice of how you feel. If it is high and you don't have PMR or GCA symptoms, don't panic. If you have symptoms but the ESR is "within the normal range" it doesn't rule out a flare or relapse.
The above is very useful,I started on 20mg of Preds end of July,since this has been reduced to between 15-12mg I seem to be back almost to where I started with the PMR, which is making me miserable,and I am finding hard to carry out normal household .shopping and social activities, taking Paracemol does not help.
Did your GP check for other causes at the time?
The normal starting dose for PMR is 15mg (occasionally 20mg) and you should be reasonably well on 15 - many patients never achieve total freedom from pain although some docs seem to think you will be "back to normal on pred" - if only! On the other hand, if you started on 20mg and your first drop was to 15mg (which a lot of doctors will try since it works in other things) that drop may simply have been too much for you - everyone is different but most people would struggle with a 5mg drop and some can't manage more than 1mg at a time even from 20mg but by dropping in such small steps ARE able to get down to below 10mg.
And no - paracetamol is unlikely to help as it has no anti-inflammatory action. Ibuprofen might - but you should not take it (or any other NSAID/non-steroidal anti-inflammatory drug) when you are taking pred as the risk of bleeding in your gut is far too high. However - for most PMR pain pred is the only long term answer.
Many thanks for your response,.I have been into see the Doctor this morning, who has suggested that I go back upto 15mg and to see as to how it goes on that dosage,when I started them in July,at 20mg, about 2 weeks later I was told to take 18mg,then 2/3 weeks later to drop17/16,with the aim of reducing them further over the following few weeks,then Mid Oct into Nov 15,mg and 29th Nov to 12.25. mg and from 8th Dec to 10mg. My GP said that he was going to write to get me an appointment with Rheumatologist,but when I went to see her initially, she was not helpful,as she told me that she was not sure as to whether it was Fibromyalgia or Polymyalgia,as the level of 5m was not high, and women over 60 normally it is PMR and under 60 Fib, so I went to see a Neurologist who said that between March when I saw the Rheumatologist and seeing her in June,my ESR was had reached 33.admitedly My GP said that he N tests were different to those of the Rheumatologist.
I did explain to GP that Paracetomol was of no use,even though he had told me to take them....he did not comment,meanwhile can you tell me if taking Diretics is also OK whilst on Prednislone, .
Is it safe to increase to 16mg if 15 mgdoes not work well. I trust that taking Puffers that contain steroids OK when taking oral Steroids as I have COPD also
I would give it a few weeks at 15mg - it does often improve after a time. Don't overdo things - give your body a chance. Don't rush about "doing" Christmas! Being on pred doesn't take you back to being normal and many people make the mistake of trying to catch up all the things they couldn't do pre-pred and end up being in a lot of pain as a result. Your body takes longer to recover from exercise when you have PMR and stress of any sort is also bad.
To my knowledge using your COPD medication will be fine - oral steroids are often used in asthma alongside the puffers. Some diuretics can interact, although I'm not sure which and how except that some can make you excrete the pred faster in your urine so that you may need a higher dose to get the same effect if that did happen. The best person to ask is your pharmacist (not the counter staff) who knows more about medications and interactions than most doctors. It is a good idea to use the same chemist all the time as then they can keep a note on their computer of your regular prescriptions and will recognise if you have been given 2 drugs that aren't compatible. It has become a problem in many practices where there are different doctors and you don't always see the same one. I had a nasty reaction when I was on Medrol and given an antibiotic that doesn't mix and spent several months on crutches as a result! That was seeing the same GP and the same pharmacist -"Oh, I've never seen that before...". I told them they had now!
Good luck
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