I just returned from having my standard blood work taken and the results are in (very efficient, I might add) and I note that my white blood count is up to 9.0 mg (not in the H range though) but my ESR is also up to 23 mm and IS in the H range and this is the first time in months.
Reading the entries on the forum I see many of you refer to your CRP levels , whereas I am in Canada and I have only had the ESR testing. Looking on google ( where else) I realize that they are similar, but different and I will ask my Rheumy when I see her in September, but would appreciate comments/advice in the meantime.
I have slowly, slowly been tapering down from 30 mg when I was first diagnosed in July 2018 and have been on and off 5 mg/6mg for about 3 weeks. Granted I do wake up with sore arm/shoulders/wrists, sometimes very sore..... but the pain does go away in a few hours so I don't want to rock the boat and hope to stay on 5mg for at least a few more weeks before attempting to drop to 4.5...Again, comments/thoughts/advice would be great.
Thanks to all. The support is marvellous.
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Cairocat
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If you have aches and pains that would indicate that you have have gone below the level of Pred you actually need. Your ESR reading would also seem to confirm that.
So rather than thinking about reducing maybe you should go back up to 6mg and see if that stops your current pains. If so, stay there for a few weeks before you consider reducing again.
You should never think about tapering if you are having symptoms - they invariably will only get worse.
Thank you for your prompt reply . Thing is I have always had...aches and pains, even when I was on the 30mg. Certainly not nearly as debilitating as the pre-prednisone days which were a nightmare, so I just trek on. You know, that I "can do this" attitude and I do!! (sort of)
No offence...but I don’t think 30mg to 5mg in one year is a slow reduction. I think you have gone beyond the level you need. To not want to rock the boat ‘ I can understand, but I suspect things will only get worse, unless you raise your pred dose a bit. It’s not a race to zero!
Re ESR or CRP levels I’m not sure they matter much when you have adverse symptoms. Symptoms are key.
Thank you Mary. I was told, by the Rheumy that the initial 30 mg was far too much and see that many of the forum members began at 20 or 15. Under her directions I tapered 5 a month until I got to 15 then slowed down to 2.5 a month , and finally 1 a month to where I am now. Right now she is telling me to alternate between the 6 and 5 and see how it goes....so, as much as I really, really like just taking that one little pill every morning, I will buck up to 6 and see how it goes. Of course I am in rampage to finish off a crocheted baby blanket and that might also have something to do with the sore wrists and shoulders....duh! ya think??
I have a "stash" of yarn that is like a magnet that draws me in when I walk by. In addition, I get daily greetings from a plethora of yarn sellers to tempt me, so I need to be as strong I am when the house needs a vacuum or dusting.
But you must remember that PMR/Pred affected muscles don’t like too much repetitive action - which is what you get with crocheting or knitting - so pace yourself with those activities as well!! 😉
It has taken me three years to taper from 20mg down to 2.5mg. You have to take it slow. My GP says that it will probably be at least another 2 years before I can completely come off the Pred. Patience is of paramount importance on this one I'm afraid!
The important thing is to see how you feel and not reduce faster or further than you feel is OK for you. The ESR is really a backup to prove things may not be quite right. Twenty per cent of people never have raised ESR and CRP so they cannot use this facility anyway. A lot of rheumatologist say how do you feel and ignore the blood test results.
Yes, I have certainly received the message to listen to my body, and I will. Thank you . As I said earlier, this forum is an amazing support and thanks to all. Together we are strong!!!
The requisition from the neurologist has only 6 spots filled in. Glucose fasting. HbA1C. Creative. CBC. ESR. C REACTIVE protein And that makes 22 results. Once a month I go.
CRP is a protein produced by the liver in response to inflammation somewhere in the body. ESR measures the rate at which red blood cells settle to the bottom of a vertical tube of whole blood. It is influenced by the presence of various proteins on the surface of the red cells, CRP is one of them so more CRP also means a faster/higher sed rate.
The medical literature has always used both to indicate inflammation but the ESR is regarded as unreliable as other things can affect it including the time since the blood sample was taken before it was estimated. Some experts insist that CRP is more accurate, others say that both are meaningful in PMR and yet others feel that ESR may be more useful for some patients. Whatever - about 1 in 5 patients don't have raised levels of either - or at least, not out of "normal range" for a large population although they may be raised for them compared to their personal normal. What is far more meaningful is the trend of the levels so it is useful to check them regularly to find out how they work for YOU.
Your white count will go up when on pred, that is usual and nostly not of concern. That you say your ESR is up to 23 is - since it suggests a rising trend. And that sugfests one of two things: either you have another infection (a cold is enough to raise it and there are many other things) or that you are now at a pred dose that is too low to manage the inflammation.
You should have got an idea of what level of freedom from PMR symptoms you can achieve with the original dose and at each step of reduction it shouldn't be any worse than it was at the start. It sounds as if you have left that behind. You shouldn't be looking to reduce further at present - you should stick at a dose and get the ESR checked again in a couple of weeks at most. 30mg was high yes, but the top of the recommended starting range is 25, and you did reduce to a more traditional level quickly. 30 to 5 in a year isn't really slow - the median time to 5mg from any starting dose is about 18 months.
Where was the last dose where you felt your best? And do the worse mornings come on a day after you did more than usual the couple of days before? There is no boat to rock - except if you try to force further reductions when your body isn't ready and then you run the risk of a full-blown flare and having to go back to a much higher dose to get things under control again.
I am in Canada as well, we have ESR and CRP. I am tested for both every 2 weeks. Both levels are important. BTW ESR at 23 is not considered high although it will read that way on most tests. There is age related parameters that adjust the so called norm up.
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