Hi, I'm new here and was wondering if any one could advise me as my Dr thinks i have GCA

3 weeks ago i suddenly had a head ache behind right ear, very localised and happened every day, was taking paracetamol that didnt work the only thing that touched it was ibuprofen ( which im not allowed to take due to having IBD) Still it persisted and got worse, sharp pain when twisting my head suddenly,pain into my neck and arm, dull tingly ache at top of head, ear ache getting worse. jaw ache.

So went to out of hours dr last week who said i had a middle ear infection. no hearing loss though.

Then the head aches just go horrifically bad, the pressure in my head, i felt i had to hold my head to get any comfort, lying down was extremely painful, sitting back up equally hurt just as much. no pain killers touched it and brushing my hair hurt.

So went to see my gp yesterday who said my ear was perfectly fine and sent me to have an urgent blood test , test come back over 60 with inflammation in body though i have recently had a crohns flare up.

he has put me on 60mg pred and with in hours the pain had subsided and now im left with dull ache in top of head and ear still. so now waiting to have a biopsy.

I just wondered if this sounds familiar at all, im 37 so have read its very unusual for people under 50 to get this.

Many thanks


26 Replies

  • It does sound familiar - and since you are on high dose pred and protected I'll give you this:

    It can happen in younger patients and I'm glad you have a sensible GP - would there were more of them!

  • How sad that story was.

  • Yes - and that's what makes me so really angry when a doctor tries to tell someone they are "too young". Disease doesn't count the birthdays - whatever some people may believe. There are always outlliers.

  • Thank you, how terribly sad. I realise I have been very very lucky to have seen this gp yesterday. Another night not have known about it.

  • Have a read of this book by Kate Gilbert. It is available on Amazon. "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival

    guide. 2nd edition.

  • It sounds very familiar. Well done you for persisting to GP and also well done to him/her for knowing how to act. Hope he treated you before your sight could be affected.

    On here you will find lots of clued up people who will help you.

    Best wishes

  • Thank you, I haven't had any problems with sight. I think if it is confirmed Iv caught it very early.

    Is ear pain common, as I can't find much on that?

    Thank you

  • Ear involvement isn't uncommon - as they have finally cottoned on to and a survey about that was done last summer after it was realised that 3 out of 4 people at a support group had hearing loss. Said support charity funded the analysis of the returns, which were good thanks to the response from the forums.

  • Thank you, it didn't feel like an ear problem to start with but not sure if the swollen arthritis are pushing against the middle ear now. And that's why it felt that way. Right now I'm just pleased the headaches have gone to a dull ache. Thank you for your help

  • I believe it to be a less common symptom. I think it says something about it in Kate's book.

    Fantastic that you have no eye trouble. X

  • I will take s look at the book when I get home. Thank you

  • My wife had bad occipital pains back in August 2016 and ear ache, also some muscle pain in lower leg. I asked GP if it could be GCA and after consulting a consultant rheumatologist said no, probably Polymyalgia and put on 20 mg prednisalone. Subsequently saw another rheumatologist who confirmed not GCA and steroids slowly reduced. leg and Occipital pains went but not earache. Steroids slowly reduced but in January pain on eating (claudication) and swelling of blood vessels in temple.

    Urgent (private) appointment with rheumatologist. GCA diagnosed and 60 mg prednisalone. Slowly coming down (40 now) but feels dreadful, but better than going blind or having a stroke. (Also on aspirin and bisphosphonate).

    Blood tests have varied but esr, crp raised and also positive anti ccp test. All back to normal now.

    GCA affects arteries, mainly external carotid and its branches, that's why it's an arteritis. This means any arteries can be affected and that includes occipital arteries.

  • What possessed someone to say occipital pain was likely to be PMR? It's a typical place for the headache in GCA.

  • Seems they had never come across GCA in occipital area !!!! Trouble is that most common is temporal area and my wife had no symptoms there or any claudication etc. Have you come accross chewing gum test? How reliable do you think it is?

    Anti ccp tests ..... I know they are about 95% certain for rheumatoid arthritis but what are results for GCA patients?

  • I don't think anti-ccp is generally positive in GCA but don't quote me on that. It is fairly specific for RA as I understand - and RA is an arthritis, GCA is a vasculitis, so not much link. I think if it is found to be positive it is a sign the patient may be more likely to develop RA in the future.

    Er - it makes me wonder about their knowledge of anatomy! Or maybe neurology...


    "The headache of GCA has no pathognomonic features, but typically—and most importantly—the headache is either new, in a patient without a history of headaches, or of a new type, in a patient with a history of chronic headache. The headache is usually localized to the temporal or occipital area. Less often, the pain may be predominantly occipital or occipitonuchal; occasionally it is diffuse."

    I know PMR and GCA are my "specialist subjects" and I have read a LOT. But if I know that - then consultant rheumatologists REALLY should be aware. I might excuse a GP.

    I suppose the chewing gum test may have some virtues - but jaw claudication, like any of the other so-called "typical" signs or symptoms of GCA ,will only appear in well under half the patients at presentation. So it MIGHT identify something a patient hadn't thought of or associated with their illness but it certainly isn't foolproof.

  • Thanks for that. We looked back at a Anti-CCP Antibody test result (60.4 CU) and there is a note which reads "?GCA-urgent please" (We did not understand it at the time!!! ) The main note, however, concerns strong association with RA, but my wife had NO physical symptoms of and as a concequence consultant held off prescribing methotrexate.

  • Spoke to a pathology scientist today re anti ccp. He says definitely no connection with GCA.

  • Thought so - just couldn't find anything to confirm it that way - just, not usually positive.

  • What is GCA. I have had polymyalgia for 2 years and now 2 months off the steroids. But neck pain is slightly worrying and going blind I think my headache is due to worrying about what will hit me next!! Please explain someone who has experienced this

  • Giant cell arteritis. It is closely related to PMR and PMR can be a symptom. It affects the arteries in the head and chest area. When the head is affected it can affect blood flow to the optic nerve and cause visual symptoms. You should have been warned about the symptoms because if you develop them (headache, scalp and jaw pain and visual symptoms in particular) you need to speak to a doctor urgently.

  • Thank you for that I had never heard of it. I don't think I have those symptoms but do seem to get more headaches than I have ever had in my life not on my forehead but the sides of my head if that makes sense. However will mention it to my doctor when I see him shortly

  • Yes - temple headaches would be suspicious - sort of where the sides of your glasses sit.

  • My GCA pain is concentrated on occipital bone, ear and eye but often the former is the worst....I know it's mentioned in the literature but I haven't seen a lot of people state that as a symptom. So glad you are being well managed, good luck.


  • Thank you all, mist of my pain was behind my ear and now it's a tingly feeling dull ache headache after 3 days of pred. Im keeping an open mind till confirmed though as even though my test were all very high I do already have a autoimmune disease. And my ear feels blocked. Though dr says ear is fine. We will just see. Thank you all for your responses

  • TARAVDM, my polymyalgia rheumatica started with severe neck pain.

  • Hello TARAVDM. Reading your post, I know how far I have come on my journey with GCA. I was working 11 years ago, and woke 1 night with the worst head pain I have ever had in my life.What you describe is what I went through, as well...the lying down making it worse, combing hair, jaw pain.I am now on 3mg Pred, tapering to 2mg, on the Dead slow method. I am sorry you have contracted it at 37. I was 59. You will get fantastic help and support on this forum, so I wish you well.

You may also like...