I was diagnosed two weeks ago. Doc put me on 20 mg of pred for 5 days and then reduced it to 10 mg for 1 month. 3 days after starting I was pain free and walking further than I have in a long time. This lasted for 4 days as on the 6 day my pred reduced to 10 mg and my pain now is worse than ever. I need some help as to how others are medicated so I can show my Doc. Not yet got GCA but have had episodes of bad stabbing pain in my head.
Thanks so much in advance for your help. I am a transplanted Brit living in beautiful Calgary, Canada.
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Nosslrac
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I am so sorry the pain has come back. Are you able to return to 20mg? By dropping down to 10mg like that was probably a recipe for disaster if you have PMR. Normally you start at around 15-20 mg and stay on that for at least a month if not more, to ensure that the inflammation is under control. A blood test usually confirms this if you has raised levels for ESR and CRP initially. You can then start to slowly reduce, ideally not more than ten per cent at any one time. My rheumatologist tried to get me to reduce from 20mg to 15mg after three weeks and that was a disaster. He seemed much more interested in getting me to reduce the pred than to control the pain I thought.
It was written for presentation at a conference for GPs by a top PMR expert in the UK and his team to help GPs diagnose and manage straightforward PMR without recourse to a specialist in hospital.
you will find the BSR Guidelines for the diagnosis and management of PMR. The Guidelines are generally drawn up by an international team - but PMR is PMR and doesn't change in nature from one country to another anyway!
Your doctor should have left you at the 20mg for a month - and then reduced more slowly. Or he could have started with 15mg which is generally enough. But you need a few weeks at the starting dose to clear out all the existing inflammation and then you reduce slowly to find the longer term dose. You DON'T succeed particularly well in PMR by dropping the dose by 10mg.
Just in case - both contain info about managing GCA. I'm assuming that you are under a GP given the usual distance to a specialist in Canada! Don't ignore those stabbing pains - especially if you develop jaw pain when chewing or any visual problems, however fleeting. Then you need lots more pred and for rather longer than 5 days!
I should be in Whistler in May - and hopefully in Calgary in June or July when I and my husband are attending a meeting in Chicago. We'll tack on a holiday while we're nearly there!
Thank you for the info. I have printed the symposium and will give it to my doc. He is very good about referrals and specialists. In fact I have been fighting this pain for 4 years and was diagnosed with fibro. This doc has been diligent and the PMR diagnosis while not great, is better than not knowing.
If he is happy to listen to experts (and you) and be educated then he may be able to manage you himself - it's just he went about it the wrong way to start with. If he recognised the problem but has never managed a patient before what he did is a normal way of using pred - for most things, but not PMR and GCA!
PMR is considerably better as a diagnosis than fibromyalgia - there is at least an effective way of managing the pain! You won't be on 20mg forever but you do need to get all the existing inflammation under control and cleared out. Then he can let you reduce to a much lower dose.
Where in your head is the stabbing pain? And does it subside relatively quickly?Because you used the word "stabbing" I immediately thought of trigeminal neuralgia. I used to get that but haven't for many years. It would bring tears to my eyes, and then vanish.
I saw my eye specialist yesterday as I have had cataract surgery. He showed me exactly where pain from GCA would be. I think previously I just had a few occurences of neuralgia.
saw my GP too and he immediately upped the prednisone and will let me manage the gradual lowering of dose following the BSR recommendations. Had a bone scan and have very strong bones (good healthy british stock) even though I am 71. I appreciate the help I am receiving.
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