I was diagnosed with GCA in 2018 but I never had the headache in my temples as a symptom. For the last 2 months I have had sharp pain in both temples and then will subside to more of an ache. My question is, could this be a symptom of GCA even though I have been treated with prednisone and Actemra for 3 1/2 years. back in 2018, they did do a temporal biopsy which was negative, but that was after the fact that I was diagnosed with GCA after a PET scan. My last labs that were performed about 3 weeks ago were fine. I have not contacted my rheumy regarding this, simply because he will tell me to get labs done and I just had them done by my cardiologist who suspected that my GCA was rearing it's ugly head causing some blocking in my arteries, which was not the case.
So, do you know if you can get temporal pain associated with GCA, years after you've been diagnosed, when you never had the headaches/eye issues to begin with?
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Always a consideration, but any new headache should be investigated no matter what.
You don’t say what doses of Pred/Actemra you are on…and have you have a sight test recently - eye strain can lead to headaches ..and have you done anything different in the last couple of months that could be causing them.
5 mg of pred daily and 1 injection of Actemra weekly. I have an appointment with my eye doctor next month because I thought the same thing, that it could be a problem with my vision.
I will! I also did get back on the phone to my eye doctor explaining my situation and they did get me an appointment a little bit earlier and also said they will call me back if they have any cancelations before then.
Since I never had any eye problems with the onset of GCA, i just wanted to make sure that it couldn't happen after a few years of being treated for it. Thank you so much for responding. It really puts me at ease!
Good that you’ve got an earlier appointment- I would never say never about eye issues and GCA ( if you know my story you’ll know why) - but would have thought it unlikely after so long. Fingers crossed it’s not.
If you had no temprle pain how did they diagnosed GCA , I’ve had lots of very tender tempells fussy head etc but no blurry vision 🤷 I am convenient if they don’t feel your going blind they don’t want to know
Headache is only one of a range of symptoms - and is the presenting symptom in less than half of patients (that is the reason you go to the doctor in the first place). Probaly a quarter or more of patient with proven GCA never have a headache but if people do have a headache it is more concerning to A& if it is occipital (low down at the back of your head, by the knowledge bumps)
I think you can in theory. I have been diagnosed with GCA/LVV on the basis of abnormal cells in my armpit. I never had the typical headache, jaw claudication, tongue pain, temple pain or anything like that. My Rheumatologist still feels my temples and is interested in headaches etc. my blood tests won’t show much because of 7 mgs Pred and Tocilizumab /Actemra injections. I went to A&E with a very severe occipital headache during this period and was treated like the most pressing case that day. I was given a head CT Scan eventually. So doctors definitely think that this is a serious possibility. I also have Aorta scans because GCA can present there and now there is a dilation that I am waiting to discuss with my Rheumatologist when she gets the full cardiology report. So I think the answer is that we have to be vigilant because the disease can develop in spite of treatment or insufficient suppression perhaps.
I've also recently been experiencing sharp pains in the left temple only, but these have been intermittent and transient, and vision seems ok, so have reisted pressing the panic button so far (Diagnosed GCA in 2015 from month long headache plus significantly raised CRP/ESR, currently at 3.5 mg pred).
CRP was very slightly raised last week, but this is complicated by PMR (as diagnosed) muscle pains. I'm currently trying to get an appointment with my eye consultant, but I'm not holding my breath!
It's really difficult to know what the best thing to do is in these circumstances... I really empathise.
Hi dose that mean your in room 101 😃Last time with pmr when into panic mode
Convince I had GCA , most of simptons really upt the dose 😱 then doctor said I shouldn’t have has Symptoms gone nowt to show rummy. So no diagnosis 😵💫
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