After my Feb jab I had symptoms of GCA, classic unremitting eye temple face pain and had a blood test which was ‘clear’, so the 60mgs of Prednisolone were reduced to 5mg.
Today I got a specialist letter recounting symptoms and quoting blood test CRP of 7.6 on that first day. How did they think that was normal? I feel terribly let down as I was clearly at risk and knew it. I took 30mgs for a week from advice here and remained on 10mgs as I was dropped from care. Tbh I’m disappointed at my GP and specialist as I’ve not had a proper diagnosis or treatment from them. I still have headaches and eye disturbances plus general tiredness. Am I being unreasonable?
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Lollybygolly
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Ah thank you! I don’t keep a record of my baseline CRP results so you may be right, my normal could be relatively high. I appreciate your input so much, thank you!
Legally you are entitled to have copies of your test results. I ask the receptionist to print them out for me and then stick them on a spreadsheet being a nerd. You can also have the facility to view your results on-line, the surgery should organise this for you. You will need some identification such as a passport to get it set up so you have a password.
Actually some surgeries aren’t very good at informing what your rights are concerning your medical notes - whether they think it a sign of power if they hold on to your information I’m not sure.
But as piglette says, it’s your right to have access.
If you download the NHS app , you will be able to see your GP blood tests on line within 48 hours usually. You can also request your repeat medication without going to the surgery.
You do need to know what your lab quotes as the normal range as it can vary a lot - it is also helpful to keep a record to see how low you can get with pred. That is an indicator of your ideal at least even if not your normal.
My consultant told me recently that he had seen a patient with all the symptoms of GCA including an ultrasound, and yet the CRP blood test was within the normal range. CRP isn't always a reliable marker. However not sure how widely accepted this is/
It is often mentioned in the literature that up to 20% of patients with GCA and/or PMR have acute phase markers that remain in normal range. In fact, it has been acknowledged that ESR is a more reliable monitor for ongoing disease activity. The only time my CRP was raised was on a day where blood was taken and I was having a bad episode of atrial fibrillation - back to normal the following week.
My CRP was 78 when I was diagnosed with PMR in 2016 and 87 when I was diagnosed with GCA in 2019. In the intervening years it has been as low as 1! Do ask what the 'normal' range is for the laboratory which did your test. I have access to my results online, via the GP's computerised system.
Thank you all kindly for such rapid response! I shall check out my baseline markers, simmer down a bit and remember I can get my results online - my GP service has computerised interaction so I’ve no excuse! Have a great day everyone. X
It's sad to hear that you are still suffering. I sincerely sympathize. I just hope you find the right person to deal with your problems. I'm lucky that I have a supportive GP. But after initial GCA diagnosis like you my results have come back nearly" normal" since. The feeling of being wiped out by aches and facial pain is tiresome. All I can say is push to see another expert. Currently I am seeing a neurologist and undergoing various brain scans. Before embarking on another course of treatment. So just take care.
I had symptoms of GCA after my COVID second jab, I didn't have any problems after the first jab. Quite scary as I was within 3 weeks of being off my meds. My CRP usually 5 went up to 10 and the headaches were the sort that don't go after taking paracetamol.
Rheumatology organised another CRP to see if it was going up or down and booked me for an ultrasound scan.
I hadn't associated my symptoms with my jab until the second CRP result was 5 and my symptoms faded.
I cancelled the scan and 2 weeks later had a routine appointment.
I am now off the meds, in remission after almost 6 years. Trying to deal with what is left of my muscles and body (on a long list for 2 new knees..).
Don't be keen to join the GCA gang, be grateful if you duck it. You have enough going on with RA. Take care.
Such good advice thank you! I’m on a gluten free low carb veggie and fish diet to lose the 2stones I put on last year and this. I need to get the weight off my knees and hips.
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