GCA blood test

[SanG55]

I had a blood test for GCA yesterday, can’t get through to GP, but can’t through. The results are on my notes online but as they did other tests, I’m not sure which ones I’m looking at for GCA - can anyone advise please. Many thanks in anticipation

[DorsetLady PMRGCAuk volunteer]

ESR & CRP -see this post from FAQs but they only show you have inflammation in your body -not what is causing it -

healthunlocked.com/pmrgcauk...

…and this (don’t think it’s included in above)

healthunlocked.com/pmrgcauk...

[SanG55 in reply to DorsetLady]

Thank you 😊

[piglette]

They normally do several tests to check if it could be something else rather than GCA. But as DorsetLady says it is the ESR and CRP that point to inflammation in the body which may suggest it could be GCA, but not necessarily. What symptoms do you have?

[SanG55 in reply to piglette]

Tender scalp, headache across forehead and down temples, jaw ache under my ears, feeling tired and generally unwell. Blood tests have come back normal 🤔

[piglette in reply to SanG55]

Around 20% do not show any rise in inflammation markers, which can cause problems as doctors assume you are OK.

[SanG55 in reply to piglette]

What to do? I feel at a loss 🤔

[DorsetLady PMRGCAuk volunteer in reply to SanG55]

Well, you have to keep pestering your doctor (even though you don’t feel like it) -sounds very GCAish to me - to take notice of your symptoms-and I’d be asking to be referred to a Rheumy as a matter of urgency.

..and telling GP that if you do have GCA then your sight is at risk,and you’ll hold them personally responsible if the worst happens -or take yourself to A&E where hopefully someone will take you seriously.

[Rugger in reply to SanG55]

Can you get back in touch with the Rheumatologist you were referred to 2 years ago? Do you have any letters with a phone number?

[SanG55 in reply to Rugger]

I’m not sure, need to check that one 🤔

[PMRpro Ambassador in reply to SanG55]

Symptoms always trump blood results - and that is suspicious enough for most of us to have spidey feelings ...

[SanG55 in reply to PMRpro]

So confused 😣

[piglette in reply to SanG55]

Do you have any trouble with your sight? If so I should go to A&E and tell them you also have a bad headache, tender scalp, jaw pain etc. GCA should be considered an emergency on a par with suspected accute heart problems. Don’t let a GP who is not very knowledgable about the disease cause you to lose your sight. It has happened to people because doctors are not aware and misdiagnose.

[PMRpro Ambassador in reply to SanG55]

I'm sure you are - what do you find particularly confusing?

[Grammy80]

I can only add ....follow the excellent advice and push for an appointment. Wasted time can mean some vision loss....so I would pester away!!! I certainly hope not, but if it goes...it is gone.💕

[SanG55]

Thanks for all your replies, I really appreciate your time and knowledge xx

[GCAYme in reply to SanG55]

I had same exact symptoms with normal CRP and ESR. Biopsy confirmed GCA. Your bio says you are on prednisone now but tapering.? If I read that correctly. What dosage are you down to? If the symptoms triggered just recently after a tapering step you should consider going back up a step or two until you can get into the right doctor.

[SanG55 in reply to GCAYme]

I was on 6/6.5mg up until 3 weeks ago when a family member got a worrying cancer diagnosis, from which I am supporting a lot of people., so I upped my dose to 7.5mg daily 🤔

[DorsetLady PMRGCAuk volunteer in reply to SanG55]

probably not quite enough with the added stress you have.

[SanG55 in reply to DorsetLady]

what would you suggest? I’m with the cancer patient this weekend and his wife (my sister) supporting/talking/planning etc 🤔

[PMRpro Ambassador in reply to SanG55]

Do be careful about what you commit to - supporting is one thing but heavy physical care is totally another. This time last year I was caring for my dying husband with no help at all until the last 10 days when my daughters were able to be here. I'm just getting out of the resulting flare. It had been the hardest 2 years of my life.

[SanG55 in reply to PMRpro]

Thank you so much, they are aware of my physical limitations 😊

[DorsetLady PMRGCAuk volunteer in reply to SanG55]

Maybe up to 10mg, certainly for the weekend, and a bit longer if required.... once the major stress (not all obviously because that will continue) has passed, you may then be able to drop back down. But I would do that in 2 steps, first to 8.5 or 8mg for a couple of weeks, and then to 7.5 or 7mg - and see how you are then.

It's a difficult time, lots of us have been through similar, and you really have to gauge what's best for you....some may need more help (Pred) than others, it's very individual thing.

[SanG55 in reply to DorsetLady]

Thank you so much

[Maxslady]

How long have you had symptoms? Mine began with tender spots at temples, progressed to headaches which I controlled with ibuprofen. They then began to wake me up at night which I had never experienced before with a headache. This was over about a 3 week period. The last straw was when I had jaw muscle pain while chewing. I called my doctor and he took me seriously. A biopsy proved the GCA diagnosis. If your symptoms are following this pattern somewhat - progressing - I would definitely keep on seeking medical treatment.

[SanG55 in reply to Maxslady]

Thank you 😊