I"m sorry but I need your help yet again! On the advice of the Rheumatologist that I saw 3 weeks ago (privately- no hope otherwise!!!) I have just got the results of blood tests taken last Friday: CRP is 19 and ESR 22 so both still raised and it's the CRP result that most concerns me. I am tapering from 7mg Pred to 6.5mg and feeling very, very despondent . My question is what does it mean when these inflammatory markers are not going down after 2 months and what ought I to do about it? My GP doesn't seem very knowledgable and I didn't like the rheumatologist- he was "running late" and clearly wanted me in and out asap!!!!!
Raised CRP: I"m sorry but I need your help yet... - PMRGCAuk
Raised CRP
The ESR at 22 is at the top end of normal range. The CRP is on the high side - but what were they originally? How have they tracked over the year and half you have had PMR? And have you got anything else going on? Like a chest infection? And most important of all: have you got PMR symptoms returning?
Why did you see the rheumy 3 weeks ago? Being stuck at 7mg for some time isn't a problem - you are never reducing relentlessly to zero, you are tapering to find the lowest dose that gives the same result as the starting dose did: the lowest effective dose. Your GP might be familiar with it as titration - he presumably uses it for other medications but there he starts low and goes up until he gets the result he wants. With pred you start high and work down. The only basic rule is the steps down should not be more than 10% of the current dose and you shouldn't feel worse at the end of a taper step than you did at the start. If you do - stop reducing for a bit.
Thank you for your reply pmr pro. 6 months ago ESR and CRP went back to normal levels, 1 month ago ESR was 22 and CRP was 10. ( at the time of diagnosis both were extremely high but can’t remember the figures).I haven’t had any other illnesses at all and have , in fact, been feeling generally much better- less pain and fatigue. I only went to see a rheumatologist because I felt I needed a second opinion and I have osteoarthritis in my hands and now my feet and wanted more advice. Should I increase the pred temporarily and if so to what level?
I assume you were on more pred 6 months ago? What was the ESR they considered normal?
That was the marker to tell you what to aim for - if your markers were normal then, that is what you are aiming to stay and as you reduced you should have had them checked at intervals as the dose went down. The increase in the markers is a warning - certainly don't reduce further and if it were me I'd add 5mg to this current dose for a few days and then drop straight back to the dose above where you are now. And get the markers checked in a few weeks. If they are OK that is probably where you need to be for a while.
The important thing is how do you feel? If you feel OK don’t worry too much about the markers. I have just checked my ESR and it says normal range is 3-30, the top figure may be higher as one gets older. In fact I noticed my actual reading is 90, but the doctors just seem to ignore the readings as they are always high. I have just checked my CRP and it is 31. I was never contacted about it.
Thank you . You have both made me feel less anxious about it😀. I feel as well as I think I can feel considering I have PMR- not a lot of pain and that’s what I couldn’t understand. Maybe I’m putting to much emphasis on the blood test figures- I used to work in a biochem lab so I understand results but probably not the “ medicine” that goes with it! 🤔 I will increase for a week and ask for more tests in due course. I feel soooo much better getting advice from you- thank you.
In our illnesses, blood markers are important at the diagnostic stage - although, as you may know various things can raise inflammation, not just PMR or GCA.
They become slightly less important as we go along unless they are consistently rising.
The most important factor is how you are feeling in yourself and whether your aches and pains are under control...that is what you factor in when you decide to taper or not.
Blood markers can be used to confirm your inflammation is control or not, but they do have a habit of lagging behind symptoms.
That scenario also can have a detrimental effect...some doctor take note of bloods levels only - and think they are more important than a return of symptoms - and therefore don’t always believe the patient when they complain.
Favourite saying “ your PMR is okay /gone because your bloods are normal”.....
No sorry, doesn’t work like that. Symptoms are the key.
On the other hand, one raised blood marker shouldn’t produce a knee jerk reaction - it needs to be rechecked in a week or so.
I think I am going to pack in having blood tests as the GPs just ignore them and I now have to go to the hospital to have blood tests, as my local surgery have given up doing them.
They'll like that - won't come off their budget ...
I will have to think of some other way of using their budget which does not mean I have to wander off to the local hospital and queue outside in the rain for a blood test!!
It's lunatic - when we need blood tests we are given an appointment time to turn up and the phlebotomy clinic is in the hospital. It is actually the same area used for vaccinations - blood out in the morning, jabs in in the afternoon and evening
In 9 years, my markers have never gone back to normal levels. I hardly ever have them checked now, but did recently and CRP was 31. Both Rheumy and GP not worried as they are more interested in how I am feeling.
Thank you all for your replies, much appreciated! I’m smiling again 😀