Brain fog and poor memory means I can’t recall asking this before. Am I right in thinking that CRP results are going to be lower if you’re on enough pred to control the pain?
It’s just I do recall the last time I saw my rheumatologist he said that my CRP levels are not really abnormal at 9 but I was on 12mg of pred at that time.
Hi Griggser If you’re on a higher dose of Pred your CRP should be lower BUT if you have an infection eg Chest Infection it could still rise.
Hope you’re feeling better?
MrsN
Before I was initially put on pred my CRP was 64.
I’m just concerned that the rheumatologist is fixating on CRP results rather than my symptoms. The lady time I saw him he suggested it might not be PNR but rather fibromyalgia. I had been diagnosed with fibromyalgia a few years before the sudden onset of PMR.
Im just trying to get my ducks lined up for my next appointment, when ever that will actually happen🤷♂️
Still struggling with the post herpetic neuralgia😩 I have another phone appointment with the pain clinic next week🤞
If the steroids are controlling the inflammation related to your PMR, then you should expect your CRP/ESR levels should be lower…but it’s not quite as simple as that. Some people don’t have raised markers with their illness(es), and inflammation can be raised by other things.
Rheumy is correct - for our illness a reading of 9 is not necessarily considered abnormal….see this -
What is normal range of CRP reading?
Adult: less than 8 mg/L
Most patients (90%) without organic disease have CRP levels less than 3mg/L and 99% have levels less than 10mg/L.
Reference Range: 0-10 mg/L
Conditions associated with elevated level of CRP-
Moderate elevation (0-10mg/dL)
Marked elevation (>10 mg/dL)
Just to add - what is more important is what is normal for YOU - usually the lowest level achieved on pred and with no PMR symptoms.
Trouble is, not sure people know what is normal for them…even before COVID became an excuse for some medics to skimp on blood tests.
That reminds me that I’m due for blood tests so I’ll book that in.
I do wonder if you can become resistant to pred? It’s been 7 years now since I first started on pred.
Or as PMRpro says- it may not be PMR.
I can’t get past the fact that I have classic symptoms and this came on very suddenly 7 years ago, I woke up and could hardly get out of bed. I was in agony for about two weeks before being given 15mg of pred. Within 8hrs the symptoms were gone. I’ve never gotten below 12mg and have been up as high as 40mg when having a bad flare. I’m now getting exactly the same symptoms with hip and shoulder pain. I just don’t know what to do and dealing with the nerve damage from shingles is taking all my strength. Like I said to PMRpro I feel alone in a large ocean🤷♂️
Looking around the forum there are a couple of others with similar stories and long PMR that needed more pred as time went on. Mine has lasted - but I still generally do very well on 15mg though today i'd be very tempted to take some more!!! A combo of weather and circumstances isn't doing me any good at all!!!
I’m sure you do feel alone, and very frustrated….and it does sound very similar to PMRpro ’s version of long PMR, but how you persuade doctors who seem to have little knowledge of “ordinary” PMR let alone any variants I don’t know.
Hi Griggser, As an aside, I have had shingles twice and it was the nerve pain afterwards that was the pits.
I tried everything- even Chinese herbs to get rid of it.
The thing that worked for me at the time was a homeopathic tissue salt. New ERA no 8 - magnesium phosphate - which you can buy on Amazon.
I have used it again recently for nerve pain caused by antibiotic use.
It could be worth a try and is natural.
Thanks for the reply but I’m not sure any salt around my eye would be a good idea. The nerve pain I have is all around my right eye and my forehead.
They are very tiny tablets you out under your tongue. They melt really quickly.
Hmm what’s concerning me now is that my PMR symptoms disappeared when I was recently put on 35mg from the 12mg I was on. As soon as I got below 20mg the symptoms returned. I’m currently on 17mg and have been struggling, especially going up and down the stairs🤪
In which case someone probably needs to put their thinking cap on - this MIGHT not be "just" PMR ...
That would be good but I seem to be adrift in a large ocean at the moment. Last spoke to my rheumatologist November 1st last year. That is when he said I need to go cold turkey by weaning myself right off pred.
Think it is definitely time for a better rheumy ...
I’ve only seen him once as the my normal rheumatologist retired. This new one is the head of the rheumatology department, so I don’t know where that leaves me.
Sounds like someone was promoted in the hope of quieting him down ...
He’s ex military is all I know. I suppose I could go down the private route but don’t know a good one!
Thanks DorsetLady, you’ve confirmed what I was thinking.
It seems that even in the days when my symptoms were completely under control my markers weren't optimally low. In fact I think only once has CRP gone below double digits - and that was not all that long before they soared higher than ever and I had a flare. All along I've been well monitored with regular blood tests and nothing of concern shows up. Really treating the patient not the numbers has worked in my case, although maybe the opposite to what most people experience. 🤷♀️
Oh Griggser, it’s all so stressful isn’t it? Just exactly what you don’t need.
I am fortunately not experiencing your dreadful pain from shingles but obviously have other things going on. I am impressed ( so far!) with my new lady GP as she has organised various things including blood tests and is thinking I may also have Sjorgens Syndome, which I must say I had been suspecting. We shall see.
Also have another Rheumatologist appointment at the end of the month, but have lost complete faith in her as she has twice said ( and indeed her registrar also said the same!) that I no longer have PMR! Well, as our lovely now retired GP said, well looking at the blood results you would expect the CRP number to come down if the Pred was doing it’s job! Exactly! How intensely frustrating is that! So I certainly wouldn’t recommend her, although at the beginning she did a good job in working out about impingement in both my shoulders and discovered later tears in tendons on both.
So sadly can’t recommend a rheumy locally though very happy to hear if someone does know of a good one.
You have more than enough to contend with without this worry.
Hi Liz, I think we probably have the same GP? She has been so caring and sympathetic. In fact all the doctors I’ve been involved with at the surgery during this shingles journey have been excellent.
Fingers crossed they get to the bottom of your issue and get a management plan in place.
Yes, I think we probably do. Very, very sad to see our lovely male GP retire, he has been with me all along since getting me whisked into hospital with a brain haemorrhage in 2009, brilliant ever since. However, this new lady doctor is proving to be very thorough and helpful which is exactly what we need isn’t it?
Good luck to you with your pain management and also finding a good rheumatologist. You need light at the end of your tunnel I think!
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