this is my first post on this excellent forum. I was diagnosed with PMR about 2 years ago and was put onto 15mg of Pred and then onto a tapering regime moving to 12mg then reducing 1mg per month. I came of the pred last October. I was not entirely pain free but I was keen to finish taking the drugs and it was a manageable level of discomfort.
About a month ago I noticed the symptoms getting worse and the pain was keeping me awake at night. Ibuprofen initially helped but in the end did not make much difference. I saw the doctor last week who agreed that it seemed to be a recurrence of PMR - she took blood samples and put me back onto 15mg of pred. Within 2 days I felt so so much better - pain has gone and I have been able to sleep at night.
The weird thing is I got the blood test results through the NHS app and they are all normal. Can anyone shed any light on this? Maybe I have something other than PMR but the symptoms and the response to pred are exactly the same as before. I see the doctor again later this week and I would like to be a bit prepared for that. Any help or input would be greatly appreciated. Many thanks.
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Ramjet10
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Around twenty per cent of people do not have raised blood inflammation markers, which can be a problem for diagnosis. Luckily it seems your doctor was not swayed by the fact you do not have raised blood markers.
October to now is a very common timescale for a very low activity of the underlying autoimmune cause of PMR to allow enough inflammation to build up for you to notice the symptoms. The markers will only rise in response to enough inflammation being present for long enough to trigger the liver to produce the proteins that increase the lab results. It is very common for that rise to lag a long way behind the appearance of symptoms, sometimes as much as 6 months.
You are lucky to have a sensible doctor - and if you are lucky, you will have not too much difficulty tapering. But this time, take a LOT longer to do the last few mg. If you achieve freedom from pain at 15mg, that is your guide and if discomfort reappears at low levels of pred, take that as a warning that the underlying disorder is still around. Often 1 or 2mg is loads to keep things under wraps. Zero is not.
Thank you PMRpro for your comprehensive answer. I feel much better informed and equipped to speak with the GP sometime this week. I agree with your sentiments about taking longer to tail off at the end. I was very keen go get off all the asociated drugs especially the Alendronic Acid. A little more patience required of me I think😁
If you learn nothing else with PMR you will learn patience!!! Have you had a dexascan - do you NEED the AA? If you are managing down at 1mg pred, I would argue you don't if you don't have osteoporosis.
No I haven't had a scan and don't have osteoporosis. I will have a chat with the GP - I guess while I am on 15 mg I may need it. I will report back after I have seen the GP. Thanks again.
If I were you I would ask for a bone density scan if you have not had any confirmation of osteoporosis. You will then be in a better position to judge whether you need Alendronic Acid or not.
As piglette has said up to 20% of patients don’t have raised markers… and even if you did first time around, you may have realised the symptoms earlier this time and seen GP, and as we know blood markers often lag behind symptoms.
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