Occasional temple pain

[thepainterlyone]

I sometimes experience intense temple pain especially on my left side. I have been diagnosed with PMR since August 2017 but my symptoms started in December 2016. So I had 8 months I un medicated. I was scanned and ultrasounded for every other possible cause under the sun! My GP ruled out PMR because I was too young (56!! Haha) The rheumatologist i was referred to finally diagnosed me. Started at 15mg. Nearly 2 years later, I’m now down to 5mg Pred and every time I flirt with going lower I flare again. Anyway, my question is about this temple pain.

The temple pain lasts for a few minutes but comes maybe once a week. I’ve had my crp levels tested and they are normal so my GP has ruled out GCA. So he doesn’t believe a biopsy should be done.

Is this just part of PMR or Prednisone to have occasional temple pain?

Appreciate all of your wonderful input to this site, better than any other I have been on. 🙏🏻😊

[HeronNS]

Can you go back to the rheumatologist who diagnosed the PMR in the first place? Sounds like your GP is reluctant to make diagnosis. Up to 20% of people with GCA don't have raised inflammation markers, and you've been on pred a long time so that would have an effect I expect. Hopefully it's not a serious thing, but you really need to see someone more open minded and knowledgeable. As you know - any problems with your vision, get to emergency asap.

[thepainterlyone in reply to HeronNS]

Yes, I am going to my Rheumatologist next Monday (none nearby so have to fly and combine with seeing family). I thought I’d go armed with any comments from this group even if only anecdotal. Thanks HeronNS 🙏🏻

[Marilyn1959 in reply to thepainterlyone]

Can't comprehend you have to fly to see a Rheumy. Where abouts in the world are you?

[thepainterlyone in reply to Marilyn1959]

I’m in beautiful Port Douglas in Queensland Australia. Our nearest major town is Cairns and there wasn’t a rheumatologist there until recently, so at the time of my diagnosis I flew to Sydney and combined it with seeing my sons. So I’ve kept up with him. The price you pay for living in Paradise!!

[Marilyn1959 in reply to thepainterlyone]

Blimey! Remind me never berate the good old NHS again! Makes me realise how fortunate we are in UK.

[Hidden in reply to Marilyn1959]

Not feeling it today 👎

[Hidden in reply to thepainterlyone]

Obviously you nerd to have things checked but not sure any sort of biopsy would be useful, but i "only" have PMR (55- sucks to be them! Drs). So limited knowledge. I recently found out there is a pmr headache, and as a non headachey person i have had more headaches in past 3 years than in the rest of my life. Can you identify if there are any activities, events or "moods" that go with it? I hope you get some satisfaction and reassurance. I am at 6mg now. I have tried 3 or 4 times to drop to 5mg but rheumy said to stay at 6mg as most if his patients find 5mg a difficult drop. Best wishes. 🌻

[Hidden in reply to thepainterlyone]

P.s. i decided not to edit my auto corrected posts unless they were rude. Not name calling 😁

[fmkkm in reply to Hidden]

Thank you, your auto correct bloopers make me laugh. We need to laugh more!!

[thepainterlyone in reply to Hidden]

Ha ha! I figured, I’m so not a nerd 🤓 😂

[Hidden in reply to thepainterlyone]

I looked at your name and thought it would be safe. 👍

[pollymarierose in reply to thepainterlyone]

Start keeping a daily journal of symptoms, pain levels, etc. A valuable tool for when you're sitting in front of your doctor. I print mine out before my visits and they're added to my file. Be your own advocate.

[thepainterlyone in reply to pollymarierose]

Good idea. I do keep a journal, it was initially just recording my dosage and medications, weight etc. But over the last month I have started recording my pain levels, emotions, sleep, diet, temple pain and what exercise I am able to do. I hadn't thought of printing it out, but I will and I will show him next week.

[pollymarierose in reply to thepainterlyone]

👌 I even record what might not seem significant to me but the doctor seems to hone in on those very things and asked concerned questions.

[grannynormacath in reply to pollymarierose]

I've been doing that since day 1 and found it invaluable. However not one doctor I have seen has been remote.y interested and once , when I asked if it was OK to refer to it when answering his questions said ' Well if you want to cheat' I actually saw his eyes glaze over with boredom so I asked him if he was bored and put the document away. I asked another doctor on another occasion and he was similarly uninterested.

[PMRpro Ambassador in reply to grannynormacath]

Had you noticed this thread is over 4 years old?

[CT-5012]

Definitely get it checked out, not worth the risk to your sight. Paradise indeed, we spent a few days in Port Douglas while visiting our daughter on the Gold Coast, left on the morning a cyclone struck later in the day. All good wishes.

[PMRnewbie2017]

I have a diagnosis of pmr with (unconfirmed) gca. I also get an occasional dart like twinge in my left temple. I have had it for years and prior to diagnosis. It isn't a surface feeling but feels deeper than skin level. There is no temporal artery prominence and the visible vein is very small. Currently I am tapering to 5mg and the twinge has been more regular occurring two or three times a week and lasting about 2 seconds. My markers are normal and for me, always rise with worsenng symptoms. My sinuses aren't brilliant and I've had a life time of sniffles!

I would be interested to hear what your Rheumy says.

[thepainterlyone in reply to PMRnewbie2017]

Yours sounds very similar to mine. I’ll let you all know next week.

[pollymarierose]

I had all the symptoms of gca but low markers. One emergency room doctor didn't care about low markers and put me on 60 mg of prednisone. After 36 hours only 50% of symptoms are reduced and I have new symptoms. My gp ordered an arterial biopsy asap that I had 8 days ago. The vascular surgeon was shocked that he couldn't find an inflamed artery that didn't already have fibrosis. I almost ended up in surgery (theatre). I am now being bumped go to the head of a year long waiting list to see a Vasulitis rheumatologist next week.

You need to find a doctor that believes you in spite of low numbers! This is serious! I am living proof that markers mean nothing over symptoms. Please get help.

[thepainterlyone in reply to pollymarierose]

Your situation sounds pretty serious. Hope the rheumy next week takes me seriously!

[patriciawhite]

Similar diagnosis story for me as do many of us (18 months of looking for everything under the sun first ) . I have just had MRI re headaches and pain in temple and nothing showed just signs of old age I was advised .I am 67 and have had this for 5/6 years You kind of get used to waking up with a headache . Maybe tension because of my condition . It does irritate me when they say you are too young .Many conditions carry that label but there are exceptions to every rule . They should not be so unbendable should they .Is it tension maybe . Keep on until you get an answer ,they are not suffering this ,You are .

[PMRpro Ambassador]

I doubt there is much point having a biopsy done at this point and with that level of "symptom" it wouldn't really be justified. There are other things that could cause temple pain of that sort - is there anything that goes with it?

[pollymarierose in reply to PMRpro]

It was a biopsy that changed my vascular surgeons mind though. It was all visual by then for him. He already knew how the biopsy was going to come back from pathology. A biopsy has put me on the right path to treatment now.

[thepainterlyone]

I haven't been able to put my finger on a common set of circumstances that go with the temple pain. However, my temples are very sensitive and I always have to tell the hair dresser to avoid my temples as it feels like they are pressing on my brain when they massage there.

[PMRpro Ambassador in reply to thepainterlyone]

Has that always been so? Or a recent development (recent being relative, months even)

[thepainterlyone in reply to PMRpro]

It has always been like this.

[PMRpro Ambassador in reply to thepainterlyone]

So probably not anything to worry about on its own.

[Hellyowl]

I have GCA and I am down to 4 mgs at third attempt. I am waiting to see Endocrinologist (in a couple of weeks) as my Adrenals might not be functioning any more. because of this I sleep very heavily, sometimes 8 hours and wake up heavy headed and exhausted, most mornings I have an ache in my temples, but once I have been up and had some fresh air, I usually walk the dog, it seems to clear for the rest of the day. I am keeping an eye on it, and will tell the Endo, but I suspect it is linked to the tiredness rather than the GCA.

[thepainterlyone]

Here is my update. I have been to the rheumatologist and he doesn't think its GCA. He has ordered blood tests to confirm. However, he has diagnosed me with fibromyalgia which does explain so much of my pain that Pred did not seem to alleviate. No fun having both PMR and fibro but at least there's an explanation now for my discomfort. Best thing is there's no recommended drugs to take for fibro - instead gentle exercise, yoga and stretching. So its just Prednisone from here on, he of course wants me off it as fast as I can tolerate - I told him about the slow taper program recommended on this group. He was surprised at how slow it was. I told him he should join the group and hear how we all cope as it is far more realistic than reading medical journal reports. Thanks for listening!

[Hidden in reply to thepainterlyone]

Fingers crossed that the stretching etc work for fibro. T can be hard to distinguish what pain/fatigue etc comes from which so it might help to keep a journal of how you are and what you have done during next couple of months. 🤞🤞🤞

[Donna5658]

Hello. I’m aware this thread is 5 years old but wondered if you ever did develop GCA or if your temple pain was from something else, like your fibromyalgia? Hope your PMR has resolved by now.