I was diagnosed with PMR eight months ago after a severe bout of aches, pains, and increasing immobility over a couple of days, following an unrelated operation and coming off the pain medication that I came home with. I had been aware that something else was going on over the previous 4 months, other than my whinging gallbladder.
After a couple of weeks of recovery after the op, then blood tests, my GP said that my ECR & CRP values were marginal, but then a 7 day test of Prednisolone at 30mg/day made me feel like a new man, and he diagnosed PMR. Subsequently, I've been reducing ever since, got down to 8mg, flared, and then went back up to 11mg. This has repeated again, even at a slower rate, but am now back down to 9mg and doing a 'dead dead slow and stop' reduction. So far, so good.
Over the last week I have suffered with a severe ear-ache, so booked an appointment at the GP surgery, but not with my usual doctor - I had to see someone quickly!
Ear checked, medication sorted, . . . . . then this GP looked at my multiple blood tests, declared that I had been miss-diagnosed because the levels were all normal, and that I had to stop the Pred by reducing by 1mg every 3 days, because of the potential side effects!!
Aghast, with a throbbing ear, I made my exit.
Now I can accept differences of opinion, but without any questions of how, what and when, had led to the original diagnosis, and to recommend such drastic reduction, grates, to say the least, and undermines my confidence in what has been going on.
I have booked a 2nd appointment with this particular GP, in about a months time, (when I have calmed down), to discuss this suggested radical step, and maybe to get some justification. It is my understating that up to 20% of patients diagnosed with PMR have normal levels of ECR & CRP. And to suggest such a radical reduction of steroids, even if I do not have PMR, is likely to only cause more problems.
Maybe demand a 3rd opinion, from a rheumatologist, but in fairness, I feel I need to do that through my original GP.
Comments, please.
Written by
apttony
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Someone else will be along shortly but the advice I have heard over and over again is to reduce 1/2mg a month and if your pain starts to return, up your prednisone 1/2 to 1mg until the pain stops. Then stay there for at least a month before you try to reduce again. I personally would go only to the original doctor and stay away from the doctor that said you were misdiagnosed. When you are on prednisone you will not get accurate ECR, CRP results as the prednisone had reduced the inflammation. Hope this helps.
A lot of us know how you feel. Symptoms and response to Pred rule. You need another doctor, quick. Surprised your blood levels weren’t showing inflammation from your ear infection. It is that imprecise. Let us know what happens to you. Personally, I wouldn’t let this blip influence my taper schedule.
Uh, maybe it would be worth it to mention to the GP that your "normal levels" in blood tests are likely due to the Pred keeping inflammation under control. That's like saying that after taking aspirin to reduce a fever that whatever caused the fever is gone. It just doesn't work that way.
Pred isn't a cure - it's a treatment. When you're taking enough, of course your tests are going to reflect "normal levels". Add to that there are many patients who show "normal levels" with untreated PMR and it can be even more confusing.
The telling test is whether your symptoms remain abated as you reduce your dose. You'll know you've reduced too far when the "withdrawal symptoms", which would at first appear and then decrease over the course of a few days, turn into increasing pain and stiffness that continues to get worse. That's a flare. That's why we use the DSNS methods to reduce.
If the plan works - good. But both your GPs were wrong. The first one assumed that a response to 30mg pred was diagnostic. It isn't. Other things respond to pred and PMR is characteristic in responding to a moderate dose - 15-20mg. Some need 25mg but that is the tops. 30mg would have elicited a response for a lot of things.
You are correct - up to 20% of PMR and GCA patients have normal range ESR/CRP: that doesn't mean they are normal for them, my normal ESR is low single figures but no-one turned a hair when it ran at 16-18 over a period of weeks.
However - I'm not clear why you have decided to see the second guy again. If you are down to a physiological dose (about the same amount of pred as your body would make in the form of cortisol) before the symptoms return you have done well. If the symptoms come back as you go below that - the pred was managing inflammation somewhere. If he's intent on taking you off pred - what is he offering instead?
Precisely! As you suggest, the initial dosage of '30mg could have elicited a response for a lot of things'. Also, when I came out of hospital after my gallbladder removal, I was taking Tramadol, Ibuprofen, and Paracetamol. It was only after stopping these medications that the full effects of PMR (or whatever) hit me. Because of the effects of operation, my original GP delayed 3 weeks for me to stabilise, before requesting the ESR/CRP blood tests. During those 3 weeks I had to continue with the Ibuprofen and Paracetamol. Did that have an effect on my initial blood test?
Why do I want to see this 2nd doctor again? Well, as you suggest, there might be something else other that PMR going on.
Unfortunately, with a very painful and pounding ear, I was in no mood to listen to this doctor, who was not listening to me, failed to ask about and or explore my initial symptoms, and had suggested a course of action that was completely against everything I had learnt about Prednisolone withdrawal.
But I need to understand - not dismiss it out of hand.
It's unlikely the ibuprofen would have reduced the blood markers much - especially if you were still having symptoms. Paracetamol and tramadol wouldn't either. But if they helped some - who knows.
Unfortunately, the 2nd doctor is off ill, so this morning saw my original GP who diagnosed PMR back in June 2018, who confirmed that, before starting on Prednisolone, my CRP marked was at 51, while the ESR was normal. Now carrying on with original "dead slow, nearly stop" slow reduction.
If prednisone gets rid of the body aces and pains that is reckoned to be the best pointer that it is PMR but as well as giving you steroids your Doctor should be referring you to a specialist Rheumatologist.
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Still on Pred after 11 yrs 
Advice please!
Reducing below 10mg - should I be optimistic or play safe?
El 50 -- PMR.-reducing steroids.
