In the early stages of 'my' PMR, in June, July, last year I was a bit panicky about GCA as I started to get fleeting headaches with migraine style visual disturbance...similar to those I used to experience occasionally in my thirties and forties,( although those earlier migraines were longer and more intense, up to a couple of days and I felt afterwards like my head had been kicked in!)
In response to my query at that time, the information on this forum, however, was that a GCA headache was a headache like no other and I, and they, calmed down!
Over the last month I have been experiencing many more migraine style headaches, with migraine like visual disturbance, like fuzzy/fizzy edges to my visual field, say for 15 to 30 minutes and a sore head but not in any specific area. At least once per day but then maybe a couple of days with nothing. I have also woken in the night with a sore head. ESR and CRP are normal. Recent telephone discussion between GP and Rheumy (Rheumy appointment next month) is around whether to up the Pred to 40g. (Currently on 7mg and feeling fine on that). I said I would like to continue as normal and monitor, with the option of increasing Pred.? Do I wait then for the headaches to increase in frequency and intensity? I believe biopsies and ultrasound are not so valid with a high Pred dose. Of course I'm in a dither now.....did I do the right thing? I know there is no clear answer but would really appreciate the wisdom and experience of this group here. Thank you
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Ryeland
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Hello, Ryeland. I am giving my personal opinion here which is that as you are obviously concerned you should be pushing for a more conclusive diagnosis. Both your GP and rheumy appear to me to be somewhat blasé about your symptoms and how to proceed. I may be barking up the wrong tree and others will be along with their own comments but have a look at the following which may help you to decide what to do now:
I don’t think that 7mg pred would interfere with accuracy of ultrasound which I would prefer as opposed to biopsy which isn’t always accurate but happy to be corrected.
I’m not sure what your docs are waiting for, for you to go blind? There seems to be a degree of sitting on the fence with you in an agreement because of wanting it not to be GCA. If GCA is really a consideration, then you don’t wait a month to wait and see; it’s a medical emergency. Eyesight damage doesn’t necessarily only occur when the headache is bad; it can come any time; some people get no warning. At the very least they should explain their line of thinking to you and not in vague terms.
Also at the very least, I think they could send you to the opthalmologist to see if anything is looking abnormal. It might not be GCA but some other eye issue that also needs urgent attention. What about a neurologist if it is migraines to rule out other causes? Although not all GCA affects the eye vessels directly, you are getting eye symptoms and that needs looking into.
Agree with SnazzyD this requires further action now, not in a month’s time - irrespective whether it is GCA or not… It may well not be, but it need to be treated as suspected… no matter the inflammation markers aren’t raised.
You do need to be examined by an ophthalmologist/optometrist when you have any visual disturbances whatsoever..if your doctors are dithering, please at the very least get yourself to your local optometrist for a check up soon as, and then take it from there.
A few months before I was diagnosed with GCA, I started getting zig-zaggy brightly coloured flashing arcs on the edges of my field of vision at random times once or twice a week. When I looked this up, it seemed to correspond to ocular migraine and as I had no associated pain, I filed it away in "things to mention next time I see a doctor". GCA was then diagnosed (still no headaches, but the sudden onset of devastating fatigue and PMR pain sent me to the doctor's), Pred started (40 mg) and the flashing has never recurred since. So I'm almost certain it was a warning sign.
However, when I saw an ophthalmologist AFTER dx and asked him about it, he dismissed it as unrelated!
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