Firstly many thanks to all for Christmas Greetings and sending good wishes to everyone in return.
Next....RE my GCA.... recent blood test 22/11 with local doc revealed rise in CRP - again. (It had gone up in November 'out of range' to 26.5 and now again on recent test to 34.5). ESR was ok in November but has now shot up to 39. Most other bloods seem ok. Question: I have few to no symptoms. Occasional jaw tightness and really nothing else to speak of. When I got November results I'd recently tapered dose to 9.5mg Pred so then raised it back up to 10mg which I've now been on for a further 4 weeks. As far as I know I haven't got a virus or anything else that might raise the CRP and ESR to 'out of range'. I'm reluctant to go back up to higher dose again but am wondering if these results are telling me I ought to, despite feeling really quite well a lot of the time. Any views or suggestions would be welcome.
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Jbobby
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Don't really know as your symptoms seem under control, but it would be wise to remain very aware. I only say that because I felt well, at least I thought I felt well, a few years ago as I tapered to zero (PMR not GCA). But my bloodwork was showing increased CPR. Well I shouldn't have been surprised when some nagging symptoms I attributed to osteoarthritis eventually manifested as a major flare and a significant increase in pred needed! From that I learned that the inflammation markers can indeed mean something and should be heeded.
Thank you for the Christmas greeting. I hope you had a happy day, and best wishes for the new year!
Well, I didn't increase at first but stupidly kept on tapering because apparently I was in denial. Why not just hold the line for a bit, and see what next bloodwork says? It could be things will settle, but if they continue to go up and yet you still don't have symptoms it might be time for a chat with the doctor, because maybe something else in going on which needs maybe a few more vials of blood to be taken and tested?
My story actually has a happy ending (at least I hope so). After a few months of taking more pred (it wasn't too bad really, taking about 8, but had been at 2 or 3, and also briefly zero), but not tapering successfully I had a Shingrix vaccination, and that must have done something which made tapering easier. It was still very slow, but I didn't do the yo-yo thing any more, it remained a slow but steady downward slope. I'm currently taking half a mg, and soon going to hit the halfway point in the DSNS taper which I hope will soon mean that my new dose (zero) will take over without hiccup. However, having been here before I'm not holding my breath! And have been tapering like this since about the latter half of 2021, so really like having PMR all over again, Last time I was at zero for only a few weeks!
thats very helpful. Yes, I must be wary of detail especially as someone who's impatient to get right down eventually (might be a pipe dream) . OK, maybe I'll hold the line for a bit. Whilst also being vigilant. Really interesting re Shingrix Vaccine. I wonder how/why that helped. Great not to do the yo-yoing anymore. I really hope this next step down to zero goes without a hiccough for you
I should add that this time, unlike last time, my CRP is the lowest it has ever been. Last time I was carrying on tapering despite increasing CRP. Which does sound a little like you doesn't it? Sometimes we have to learn for ourselves. On one level I knew better, on another I really wanted to get off pred in the median time of about six years. Oh well.... Live and learn!
Wary of denial I meant....Actually I had shingles right near the beginning of my diagnosis with GCA (Jan 2023). Wonder if I should still have the vaccine
Yes. A bout with shingles does not confer any immunity.
I did post about this on HU at the time, and another forum member said they'd noticed this effect as well, that their PMR seemed to let up. This is purely anecdotal of course, but it might be an interesting research project for somebody to examine any unintended effects, positive and negative, from the unique adjuvant which Shingrix uses. Personally I've never reacted as strongly to any other vaccine
I don't know. It's generally considered that osteoarthritis isn't an inflammatory disease, but there are certainly stages when the joints become inflamed so maybe at those times it would show? On the other hand my hands in particular have been quite troublesome the last year and yet CPR has been really low. Like down to 1 or 2, which it never was before, so that particular test doesn't seem to correlate.
I have the problem that my CRP/ESR is high and every now and then I have readings over 100 and I feel fine. The doctors used to give various tests. Now they have decided it is just me. I always have high reading, ESR in the 50s and unless I feel rough I just carry on.
You may be reluctant to increase , but rising inflammation markers do need to be watched, even without symptoms - but you do mention ‘occasional jaw tightness’. Which of course, may or may not be GCA.
But certainly no tapering until you have had another test, and then you can decide what action is required, but to be at 9.5mg in just under 12 months is maybe a tad too quick.
Get another test, but obviously should you get an increase in jaw pain or any other other symptoms in the interim then follow advice in this link to stave off a full blown flare -
Thank you DL. I take that all in and have read link. Very helpful. When you say jaw tightness ‘may or may not be GCA’, what else Dyou think it could be? I’ve only ever had it since being diagnosed with GCA. But Dyou think it cd be dental issue? Also, re Shingrix vax , Dyou think necessary even though I’ve already had Shingles this year?
"am wondering if these results are telling me I ought to, despite feeling really quite well a lot of the time"
"quite well", "a lot of the time" - that isn't "well"
This isn't a one-off raised inflammatory marker result - there is a rising trend over a long period. It MIGHT not be the GCA, but it is something, to me it suggests you may have large vessel vasculitis which often DOESN'T produce definitive symptoms. It needs looking at.
And YES - you need the shingrix vaccine. Having shingles doesn't prevent it happening again, and again, and again ... The vaccine does.
Thank you PMR Pro. Well, they've already diagnosed me with LVV but until now my tapering has gone fine. what else do I need to check about it? I'll look into getting shingles vax as both you and DL recommend.
The markers are rising. That means the inflammation is rising and this is one of the occasions where you listen to the lab results since the symptoms of LVV are very often very non-specific. You need enough pred to STOP the markers going up and for a while you will need enough to scoop some of the accumulated inflammation out of the bucket to get the levels down to normal range.
You aren't tapering whatever happens - you are looking for the lowest effective dose, the lowest dose that just controls it fully. And however slowly you taper - you won't get past that.
OK....thank you....so would you recommend going to 15mg for a week or so and then down to 12.5, and maybe then 11 to 10 and see how it goes? Or shall I wait and see for a bit longer?
Oh yes - it usually goes into remisssion but you can't tell in advance when, How will you tell? You will be able to reduce the dose to zero and get off it altogether without the markers rising and symptoms returning (though not necessarily in that order!)
One other quick question...Paracetemol does seem to help completely reduce any jaw pain or stiffness in that area or neck area....does that indicate anything? could I Use paracetemol and continue with this dose of 10mg and see see how it goes? Or is that just head in the sand stuff...?
Mostly we'd say that paracetamol working might reduce the likelihood of GCA being the underlying cause but that isn't infallible, The thing that is significant for you though is that your markers have been rising steadily - they don't do that for nothing and if you ignore them and it is GCA/LVV then you could end up in trouble. You need to have it looked at and identified WHY the inflammation markers are rising.
I had rising CRP and ESR with no symptoms. Rheumatologist was concerned so ordered PET/MRI scan which showed LVV. Immediately put on tocilizumab. Relief came quickly in the form of lowered inflammatory markers and the ability to stop mucking around with pred doses. With the stability I was able to reduce pred. It's worth the conversation with your Rheumatologist.
Thanks Lemonzest. I’ll have a talk with rheumy although petscans etc already showed signs of LVV 9 months ago so not sure if there’s anything more to learn…🤔.
Not for me. A few on here have found it doesn't agree with them but compared to methotrexate or leflunomide, it's a game changer. But there are conditions to its prescription. Talk to your doctor for more specific information relating to you, if you are interested.
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