Can you have GCA but inflammation markers be normal, ie crp and esr?
Is it possible to have normal esr and crp with gca? - PMRGCAuk
Is it possible to have normal esr and crp with gca?
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Lucy5555
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34 Replies
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Hi Lucy5555. Yes, about 20% of patients do not show an initial alteration in the CRP and ESR levels and when we are on Prednisalone they are not a reliable indication of disease activity. A number of doctors find this discomfiting. I am glad mine is not one of them. Symptoms definitely rule. PMRPro can add to this, it is a question often asked.
Thank you both for your answers, that gives me hope. Can anyone tell me, with the eyesight problems, what it actually does to how you see things? Does it worsen while you're reading etc until its just a blurr? I have a lot of other conditions, but also now have many of GCA but I'm getting nowhere.
Yes. My CRP and ESR were normal when my GCA was at its worst and my eyesight was shutting down. Saying that, I knew that my ESR at 16 was not normal for me even though it was within normal limits.
Thank you both for your answers, that gives me hope. Can anyone tell me, with the eyesight problems, what it actually does to how you see things? Does it worsen while you're reading etc until its just a blurr? I have a lot of other conditions, but also now have many of GCA but I'm getting nowhere.
My early symptoms were small sparks of light in my vision when in the dark. Occasional right eye only seeing grey when I got up for the loo at night if I had been lying on my right side. When a bit puffed from cycling I would get black spots in my vision, especially in my right. At the end my peripheral vision got narrower and narrower so it was like looking down a tube. Others have transient loss of sight or blank areas, zig zags and migraine like symptoms. For the record I also had tinnitus and very easily triggered motion sickness.
All these things got better after first dose of Pred.
However, Pred temporarily mucked up my ability to focus easily and it kept changing with dose. This is common.
Snazzy, that is almost a perfect description of the early and progressive symptoms I had. I saw jagged diamonds and the headaches were excruciating along with throbbing temples, loss of hearing in right ear and a scalp I couldn't touch so sensitive. Couldn.t shout in case my head exploded felt like internal pressure as if brain was swelling. Had this for 3-4 weeks. Doctors and specialists still didn't recognise anything .
You were SOOOO lucky ...
Don't I know it. That's why I am being careful now. With what I have learnt and read here and it is a lot, I am still dumbfounded that I am in one piece. Told you I had inherited the lucky gene. I can remember for weeks every night and during the day massaging my locked muscles in the neck and it hurt to do it. I knew they had the blood supply vessel flowing through them to feed the optic nerve. I had been using this method of relief from eye strain, ache for years . I always put it down to the unusual head/neck position cyclists develop and the muscle contraction from many hours holding that position when riding.
At the very worst end eyesight can be temporarily lost ( I’ve gone blank about the medical name for this but it is a red flag for urgent medical attention). Double vision can be experienced - urgent . Then there is blurred vision. An excess of floaters. In fact anything that is not normal for you. I have regular eye health checks from my well equipped optician at £40.00 a time, just to put my mind at ease. Looking for glaucoma, cataracts, peripheral vision tests, back of the eye checks. He saves my previous slides, looking for changes. He is alert for any signs of GCA damage. I do this every few months.
Amaurosis fugax - fleeting loss of vision. It is also a sign of a TIA or even stroke so should always be taken seriously and medical help sought
That’s the words I was looking for.
s.j. what do you mean by floaters? little bits of things that look like brown cells floating inside that sort of move as you look to one side or the other?
Basically yes
Yes exactly that.
presume you mean the same as me SJ. That amount of vision disturbance sounds horrendous and scary.
These are just examples of the warnings we can get that all is not well that we should act upon. Personally, I have dry eyes and a bit of blurring. Much worse to have no warnings at all. That’s why I feel reassured by regular eye health checks.
Due for a once over at hospital soon just to make sure all ok.
Good!
Had a really good chat with opthalmologist at Darlington when he rang about the biopsy and he agreed with me and said after this length on pred was a waste of time and had possible risks as well. Was just a box ticking exercise and Rheumy should have asked for scan. If he were in my place he would also refuse the procedure. He's fixing to see me soon. I liked his honesty and openness. Nice change.
I am not sure why biopsies go ahead, when they are bound to be spoiled by even a couple of weeks of Pred. I would have felt relieved by the openness and common sense approach too. My diagnosis was confirmed by a specialist ( technician) ultrasound scan. The characteristic halo effect was noted in the artery in my left armpit. Nothing showed up in my temples at all. However, that didn’t mean that it never would. Hence the continued vigilance. I am affected by constitutional symptoms, nothing really specific. There is a shortage of specially trained , arterial ultrasound technicians. I had the great good fortune in that my Rheumatologist has both machine and technician at one of the hospitals she is based at. I don’t think that I would have been diagnosed otherwise. Head MRI etc. all clear.
I think ultimately it's down to us to be aware and vigilant and speak up for ourselves because these specialists are juggling too many other people and can't give the time needed to really get to grips with each person. It shouldn't be so but that is where we are.
DorsetLadyPMRGCAuk volunteer
Hi, And welcome
Have you actually been diagnosed yet?
If so, what dose of Pred are you on?
If not, what other conditions?
In my case (long story, late diagnosis) first signs of eye blurriness - started in one eye at bottom and over 4 days worked it’s way over complete eye… and never improved.
Not sure where you live, but an ophthalmologist might be the best person to consult…and ASAP…if you are saying your blurriness comes and goes. That could just be the precursor of a more serious outcome.
PMRproAmbassador
It is said that up to 1 in 5 patients with GCA have normal blood markers. There is a version of GCA which has no warning signs or symptoms until visual loss ccurs - it is called occult GCA.
There is a wide range of effects so it isn't really possible to say what it might be.
My markers are way down (2 and 3), but after cataract op 18 months ago I’ve been suffering from a dull ache around the cataract eye and serious loss of balance. Back to the hospital who found nothing wrong with me and put it down to ocular manifestation. I’ve never heard of it, neither had my optician. Is this a variant of occult GCA I wonder? Yet another tel con consultation in half an hour to try to sort it out. Driving me (and wife) round the bend
"An ocular manifestation of a systemic disease is an eye condition that directly or indirectly results from a disease process in another part of the body."
The fact it started after the cataract op suggests to me that maybe the new lens may be affecting the signal sent to the brain - what you see around you can really impact your balance. I had new glasses where one lens wasn't fitted quite right and I could not get on with them at all. Cut down and fitted correctly into smaller frames they were fine.
maplewoodsaukprairie.com/20...
On the other hand, another interpretation of what they are saying could be that blood flow to the ear is affected and the EAR is the cause of the problem. That could be due to GCA. Or other things.
Doctor said it’s probably detached retina. I’m up for a face to face meeting tomorrow. Doctor asked all the right questions re a flare up, my answers did not indicate GCA but my gut tells me that it’s GCA related. I mentioned the 8th cranial nerve and she asked me if I am medically trained. No, just interested in what’s happening to me. So it could be ears. Watch this space.
Wonder how he works that out. And if it is - I was always under the impression that was an emergency. So why hasn't he told you to go to A&E?
Quite!
Hi Lucy 5555. Good answers here. I had blood markers so that convinced my GP eventually. As others say symptoms rule , but be aware in my case and others showing manifest symptoms of GCA (dangerous), and PMR (painful) but more manageable, the specialists and doctors all ignored these symptoms. You must be insistent and clear about what you have and press them to take it seriously. It wasn't until I listed all the symptoms and asked them to join the dote that they all made an impact. I lost the hearing in right ear 6 months before diagnosis, they sent me for testsand was fitted with hearing aids, I had sight issues 4 months before diagnosis and tthey said was early signs of migraine. The temporal headaches and sensitivity didn't even register at the hospital. Don't assume they will all react to symptoms. If you don't insist on them doing so it might be difficult.
My inflamation number was off the scale when I contracted GCA; so high my GP immediately packed me off to hospital for investigation- he didn't know it was GCA at the time. The inflamation number came down to normal after I was put on steroids and have remained stable ever since. I'm now on 3mg steroids after 14 months.
Yes Lucy. This is how people go blind with GCA. Doctors ignore the patient’s symptoms and only look at the lab work. They often mistakenly assume that it can’t be GCA with normal CRP/ESR. Sometimes doctors need to fly without instruments, that is lab work doesn’t guide them. I have always had normal inflammatory labs. Not just with GCA, but when I had other causes of inflammation, my ESR/CRP were normal.
nothing that bad ever for me thank goodness.
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