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.
GCA blood test: Could naproxen mess up the blood... - PMRGCAuk
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.
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.
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.
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?
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.
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'
Which hospital are you at?
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.
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.
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
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.
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.
The right eye specialist can be much more useful than another physician sometimes. This is what they read:
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.