GCA blood test: Could naproxen mess up the blood... - PMRGCAuk

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GCA blood test

Kayt615
Kayt615

Could naproxen mess up the blood result? I have had headaches, temple pressure, tenderness on scalp for two weeks, they are ruling out GCA due to age and nothing showed in bloods. I have started with pain behind my eye in the last few days, I am thinking I need to go back and ask for a further test. Any experiences would be helpful, I feel very alone.

56 Replies
oldestnewest

You are not alone now you are here .

I am not a GCA expert they will be along soon but I do know they will be able to help you more if they have more details of your age and symptoms and which country you live in etc.

Perhaps you could fill in your profile while you wait. Hang on in there!

Kayt615
Kayt615
in reply to scats

Thank you

scats
scats
in reply to Kayt615

You're welcome, that's why we're here. We've all been there. Good luck.

About the Naproxen I don’t know enough about that but I’m sure some will. However, I would say that inflammatory markers in the normal range does not give a definitive diagnosis because about 20% of people never show raised markers. I was one of those. I was treated for GCA on the strength of symptom history. Personally I think some are raised but still being in the normal range they are discounted. For example normally I’ve never been above 4 for ESR but even as my sight was shutting down in A&E it was still only 16 which is way high for me but still ’normal’. I say this to docs along the way but I just get a non-committal “Hmm”.

For age, the up to date cutoff is 50 now but many docs still cling on to about 70 in their heads, the average . GCA is a type of vasculitis and Vasculitis of other types can happen at any age so why they stop looking for any vasculitis just because they consider someone too young for GCA defeats me.

The question is, if they think GCA is not it, then what is it and what scans are they going to do? Other things can give these symptoms too from sinusitis to tumours to temporomandibular muscle spasm. As an example I was given a head CT, an eye exam and later on a PET scan of the body. Unfortunately for the PET I had been on high dose Pred for 3 weeks so I showed nothing. All tests will be affected to some extent once Pred is started.

The only definitive test result is a positive temporal artery biopsy result, or if you’re lucky enough to get it, a specialist ultrasound. But even then there is a high enough rate of false negatives that even then they have to treat the symptoms as they did with me. 60mg of Prednisolone removed my symptoms within 2 hours.

Kayt615
Kayt615
in reply to SnazzyD

Ok thank you. I was at the hospital a week ago and they said likely a migraine but two weeks seems a long time to have a migraine.

SnazzyD
SnazzyD
in reply to Kayt615

How are your symptoms now, exactly? How old are you?

Kayt615
Kayt615
in reply to SnazzyD

Temple tender to touch, pulsing in temple area and pressure, pain behind eye comes and goes. Not in excruciating pain just uncomfortable, headache usually worsens as day goes on, last night I had pain above eyebrows on forehead, had to just go to bed. I have also had hip soreness for last three weeks on and off.

SnazzyD
SnazzyD
in reply to Kayt615

Do simple pain killers work? I found with GCA that nothing touched it really.

Kayt615
Kayt615
in reply to SnazzyD

They gave me cocodamol last week and that helped alot, normal paracetamol didn't work

SnazzyD
SnazzyD
in reply to Kayt615

Does going to bed make it better by morning?

Kayt615
Kayt615
in reply to SnazzyD

The headache is better but the pressure and tenderness is still there in my right temple

SnazzyD
SnazzyD
in reply to Kayt615

Most people find their GCA worse in the mornings and at night, but not all Whether you have it or not, this is an important thing to know about and deal with because it can mimic GCA. I’ve thought I was having a relapse a few times due to this, sternocleidomastoid inflammation.

healthline.com/health/stern...

Kayt615
Kayt615
in reply to SnazzyD

Ok thanks, for your help, I will look into that.

Kayt615
Kayt615
in reply to SnazzyD

I'm 40

SnazzyD
SnazzyD
in reply to Kayt615

Ok, not unheard of by any means.some have been diagnosed at this age. I don’t think GCA gets out the calendar on your 49th birthday and thinks it’s time will come next year.

Devoid
Devoid
in reply to Kayt615

Have you been to the optician?? I saw the GP several times over a 7 week period, then saw optician who may give reassurance or suggest other reasons for the pain or agree it could be Gca

Kayt615
Kayt615
in reply to Devoid

Thank you, I have optician booked for tomorrow. Just wondered if I should go to a &e again today and ask for another blood test

SnazzyD
SnazzyD
in reply to Kayt615

I suspect that if you’ve had normal bloods up to now and your symptoms aren’t worsening, they probably won’t be very attentive unless you get the right person who has the time not to just put you in the migraine camp. If you have any visual problems then A&E is the right place today or if your symptoms develop. Are you still taking naproxen? Is it effective?

Kayt615
Kayt615
in reply to SnazzyD

No the naproxen didn't help. Only cocodamol helped. The pain behind my eye is new so thought I could tell them that, as they said to go back if any eye issues. I'm just scared of the reprocussions if left undiagnosed..if I indeed have GCA. Thanks for your support.

PMRpro
PMRproModerator

As Snazzy has said - some 1 in 5 patients with GCA don't have blood markers that are outside normal range - but that doesn't mean they aren't raised for you. They can also lag behind the symptoms for a long time, as much as 6 months has been noted I believe. There are warnings in the literature about missing the diagnosis as a result of normal range markers and age being considered too young. NICE now say PMR should be considered in over 40s - if you can have PMR you presumably can develop GCA as they are practically speaking the same disease it is thought.

Kayt615
Kayt615
in reply to PMRpro

Thank you for the information, what is the literature you mention that warns about missing a diagnosis due to blood/age.

Thank you

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Kayt615

This might be what PMRpro was referring to -

healthunlocked.com/pmrgcauk...

PMRpro
PMRproModerator
in reply to Kayt615

Various articles to be found on the internet. I don't have references to hand though I'm afraid. But because it is uncommon in a younger age group does not mean it doesn't happen.

I was already on Naproxen to treat spinal arthritis. I think it may have masked some pain, but my ESR and CRP were still both over 100 at diagnosis.

Thank you , that's helpful. Although it seems bloods aren't always a reliable , did you have a biopsy as well?

Yes I did, and it came back negative. The negative result was not because of prednisolone as the biopsy was done as an emergency, only hours after my first pred dose. My rheumatologist took the view that the biopsy had missed the inflamed site and based his diagnosis on clinical symptoms. For around 20% of people bloods aren't reliable, neither is a biopsy. Diagnosis will depend on a number of symptoms which combine to indicate GCA. My 'go to' indicator is jaw and tongue claudication which I understand is a symptom only found in GCA, but I believe it happens at advanced stages of the disease, so may not be helpful to all. I hope you get a resolution soon. Maybe ask to go on a short course of high dose prednisolone (60-65mg). If it's GCA you should expect your symptoms to improve quite dramatically. These are things learned from my own experience I'm not a qualified expert, but I do have 18 months 'on the clock'

Thank you, my jaw has started aching today..Im currently sat on a&e waiting as I'm so scared to lose sight. I think because I'm 40 they are not taking it seriously.

A&E is the right way to go. I hope you get the help you need. Fingers crossed for you, let us know how you get on. Are you in the UK? I was only talking with my rheumy nurse yesterday and she was saying there is currently a big push to raise awareness of GCA amongst the medical proffession.

Yes in the UK, Yorkshire. I don't know what I'll do if they send me away..maybe see a rheumologist privately..., Thanks for your support.

I'm near Rochdale, born in Bradford. Eeeee good luck lass ! I hope you get a diagnosis quickly. I'm sure many people in this community will agree that sadly sometimes you really do have to fight to get the help you need.

They are doing blood test again, they are so sure I don't have it.

PMRpro
PMRproModerator
in reply to Kayt615

Which hospital are you at?

bpac.org.nz/BPJ/2013/June/p...

is one reference that says "However, a normal acute phase response does not rule out polymyalgia rheumatica" But you really will struggle to get a dx of GCA at your age and with normal bloods.

Kayt615
Kayt615
in reply to PMRpro

They are doing bloods again, at Harrogate hospital.

PMRpro
PMRproModerator
in reply to Kayt615

If you can get a referral to rheumatology ask to be referred to Leeds. You do have a choice,

Kayt615
Kayt615
in reply to PMRpro

Which hospital in leeds? They mentioned a neurology outpatient apt if nothing is spotted at the opticians tomorrow. Thanks

PMRpro
PMRproModerator
in reply to Kayt615

Wherever the rheumatology department is. Prof Sarah Mackie would be my choice but she is a very popular lady!

Kayt615
Kayt615
in reply to PMRpro

Ok thanks for your help

Kayt615
Kayt615
in reply to PMRpro

I can't see that she does private work so I might be waiting a long time to see her. Dr Zunaid Karim in Leeds sees patients privately which I could do for a consultation, I will look into that today. Thank you

PMRpro
PMRproModerator
in reply to Kayt615

No, Prof Mackie doesn't do private work. Just remember that even a private doctor is no different from an NHS one - they all work in the NHS and they may not be as experienced or knowlegeable in the field that interests YOU as in others. The costs of private investigations may be high.

Kayt615
Kayt615
in reply to PMRpro

It's just the delay in waiting that made me look into private, I thought I could get seen sooner.

PMRpro
PMRproModerator
in reply to Kayt615

You probably will - but I'm just pointing out that you may not get any better a reception if the doctor concerned works on the common perceptions. There are a couple of doctors in your region who wear blinkers when it comes to PMR and GCA! Maybe you could post asking for recommendations of good PMR/GCA doctors in the region and then look for ones who do private work? And I must also say - maybe they are quite right and it isn't GCA so don't keep searching for one who agrees with you rather than one who looks for alternative answers. Zunaid Karim appears to be an RA specialist judging by the research listed.

Kayt615
Kayt615
in reply to PMRpro

Ok thank you. I will post asking for recommendations, I read that his special interests included GCA. Is a rheumologist def the right person though not neurology.

PMRpro
PMRproModerator
in reply to Kayt615

For GCA, a rheumy is the right person, it is an autoimmune vasculitis and comes under their remit. Neuros do nerves - different thing. If he does have an interest in GCA then that is good - but I didn't see that.

Just to clarify, my jaw and tongue problems weren't particularly aches, more going into cramp a few seconds after I started to eat something. When I stopped trying to eat the pain went almost immediately.

Telian
Telian
in reply to Kayt615

My jaw ached most days but never when chewing - I have GCA & PMR - negative TAB - positive Ultra Sound. As soon as I went on pred all symptoms resolved after 6 hours.

We’re all different - stick your ground - do you have visual disturbance at all?

Kayt615
Kayt615
in reply to Telian

No I don't, had eyes checked with OCT scan, all clear. Back at gp tomorrow. The headache has eased and has also moved to other temple...I don't know, maybe I don't have it but my symptoms seemed similar and has been going on for nearly three weeks.., because of my age and bloods GCA is being ruled out

Telian
Telian
in reply to Kayt615

It can be difficult - you need reassurance if they’re saying it's not GCA. Tell them you’re worried about your eyesight and would like to see a Rheumatologist.

Stress doesn’t help either with any headaches - GCA headaches are like nothing else though - they don’t respond to any painkillers and progressively worsen - I couldn’t lift my head up and felt so so ill.

Bloods aren’t always a true marker to go by - they should be listening to your symptoms - and age........again your symptoms can’t be ignored.

I hope you get to know something soon and you have a sensible GP.

Let us know how you get on.

Good luck.

PMRpro
PMRproModerator
in reply to Dontwannabesick

In fact the tongue and jaw symptoms can also be seen in ankylosing spondylitis if the blood flow in the arteries is compromised. We had a lady on another forum who had a PMR/GCA diagnosis but it was eventually found she has AS. Put onto the right medication she was so much better.

In GCA the scalp, tongue and jaw claudication can happen at any time - I have mild jaw claudication for a couple of months which then disappeared, my diagnosis is only PMR but it is probably large vessel vasculitis on that basis.

Can’t advise you re Naproxen Kayt.

My GCA diagnosis was a long time coming - was treated for migraines when had negative tests for TIA/Angina/Maxofillior? due to numbness/jaw ache on the affected side for many months - throughout I always had visual disturbance which eventually worsened to temporary sight loss and only then was I fast tracked to Rheumatology - was diagnosed via raised inflammatory markers and positive Ultra Sound on the day. Had a TAB 3 days later which was negative as they didn’t get enough of the ‘bad bit’ plus I was on 50mg pred. Symptoms completely went after around 6 hours on pred. No painkillers worked on the most horrific headaches in the run up to diagnosis. Going to bed didn’t help as couldn’t bear anything touching my head nor could I raise my head in the end.

Just be mindful of your sight.

Best wishes.

The right eye specialist can be much more useful than another physician sometimes. This is what they read:

reviewofoptometry.com/artic...

Well bloods came back normal again...they have said to see optician and to go to GP for referral to neurology of headache persists.

I have PMR, so can’t speak to what sounds like GCA symptoms, but I was on 1000mg of coated Naproxen a day for 5 months before diagnosis. They were trying to figure out what was going on with me during those months. Although the Naproxen didn’t help much, I believe it did impact my bloodwork as my CRP was 29 and ESR was only slightly elevated at 32.

In the next year and a half I have had bloodwork monthly and the few times I’ve flared my CRP seems to be the best indicator as it seems quite “sensitive” to increasing inflammation which mirrors my symptoms. My first flare it went up to 20 after just a few days of returning symptoms (while it only went to 29 after 5 months, but again I was on heavy duty doses of Naproxen).

Once diagnosed with PMR my GP instructed me to stop Naproxen as soon as I started prednisone as both medications are hard on the stomach.

Now that you have both temporal and jaw/tongue symptoms I would park yourself at the A&E and insist on being seen. Advocating for our health must be done at times. Hopefully they will see beyond your age and bloodwork and call in a rheumatologist and/or ophthalmologist for a consult.

Kayt615
Kayt615
in reply to PMRCanada

Thank you. I have really tried to make my point but they just won't listen, they didn't think I was in enough pain..she said my eyes would be effected by now..., Perhaps I'll have to seek a referral myself...

So sorry you still don't have a positive diagnosis (although I pray you don't have GCA and the answer is easier to treat) . Can you ask your GP to refer you to a rheumatologist privately or at least for a second opinion.

Yes I am going to work on that today and also see optician. Thanks again for your support.

Let us know how you get on x

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