Is Occipital neuralgia part of GCA

Had symptoms since October 2016 Diagnosed with GCA April 2017 {trying to do what was suggested in someones post}

Had tapered down from 10 mg of preds to 5mg of preds but after two week decided I needed to go back to 6 mgI have been having quite bad pains in the occipital area of my head which travelled over to my forehead.

My Dr. thinks I have occipital neuralgia, which maybe the case but it is as well as GCA considering all my other aches and pains. I don't want her to rule me out as I know how ill I was when this first started. I am adjusting to the new dosage but symptoms come and go. I know I am much better than I was 2 months ago.

23 Replies

  • Do you have a Rheumatologist camera shy? I had assumed that GCA was always overseen by a consultant. I would be a nervous wreck with reoccurring head symptoms. I haven't looked at your old posts but have you just done an incredibly steep decrease of Prednisalone in one year?

    I would want a second opinion because of the eyesight risk.

    Here's hoping that you are in the best of knowledgeable hands and you've been really lucky with your GCA journey. But be really really sure. Pay attention to these rumbling symptoms, it could well be a flare building and like a bush fire you want to catch it early.

  • Hi Sheffieldjane

    No I have come down from 10mg to 5mg in 6 months. I am not due to see Rheumy until next February although I have written to head of department asking why I was started on such a low dose {10 mg} when the standard dosage is 40-60. Watch this space.....

    Hope you had a good break??

  • Hi,

    Think you really need to get this sorted, and preferably by a Rheumatologist. I see you were only started at 10mg - that’s hardly enough for PMR let alone GCA, so I’m assuming your GP prescribed that.

    Ask for a referral to a Rheumy. Sooner rather than later! And should things get any worse, or you get any eye problems straight to A&E.

  • Hi DorsetLady

    Do not see Rhuemy until next February!!

    had very bad pain in my eye a couple of weeks ago rang the eye clinic told them my symptoms but was then told I could not self refer Had to ask my GP to refer..could not get hold of her so gave up...thankfully the symptoms abated..but I know on other occasions I have phoned eye clinic and was told to go straight there...Jobs worth!!!

  • Hi again,

    Trouble is, every department is overstretched these days, but unfortunately that doesn’t help the patient!

    As I said, sometimes the only option is A&E, not to short circuit the system, but to make sure your sight is okay.

    Should you come up against a jobsworth again, just ask for their name and say if anything happens to your sight because if their inaction you’ll hold them responsible. You don’t need to do anything, but the possibility that you might should galvanise them into finding you an appointment.

  • Thanks DL

    As I have mentioned before I have end stage glaucoma and cannot afford to take risks So every one who goes to A+E is "self Referring" I have been to the eye clinics twice before with problems and when I phone them I usually get told to come straight in.

    Thanks again

  • I am glad DL popped up, she knows, you know!

    Thanks for asking, perfect peace just me and two donkeys - three if you count my OH doing all the up and down the cliff with supplies. Breath taking view and perfect climate.

    I am puzzled by your diagnosis and treatment.

  • Since GCA tends to affect the occipital area of the brain preferentially - why on earth would a doctor choose to assume a patient with a PMR/GCA diagnosis was presenting with occipital neuralgia?

    For a start, if the suspected diagnosis was GCA, a dose of 10mg was totally inadequate. And if you have a suspected GCA assessment - your rheumy appointment should have been an EMERGENCY one, not urgent which just means slightly sooner than routine.

    if there REALLY was a chance in April you have GCA your doctor is being totally irresponsible. What are they playing at?

  • Thanks particularly

    Just adds to my frustration, particulaly when I have end stage Glaucoma hey Ho

    Thanks again

  • Your GP should have phoned the rheumy to get specialist care for you. It isn't too late - and it is possible you may get funding for tocilizumab when you have an expert in charge. A GP just doesn't have the knowledge or access to such things.

  • Thanks PMRpro

    I am getting more and more frustrated with the lack of concern.

    I got a copy of a letter sent to my GP from the {I presume) head of department, not the Ruemy I saw initially and she states that I should have been on 40-60-mg from the onset. so I have written to her/him to ask why this wasn't so. It was my Dr. that put me on the 10mg dose before I was diagnosed, yet this was never picked up at my consultation...I was just told to taper from 10 mg to 5mg .I am awaiting a reply to my letter!!

  • If the headache gets worse - don't wait for the reply, go to A&E at the hospital the letter came from, taking the letter, and ask for help.

  • Dear Camerashy: I am not one of the experts. Further I am in the US, so the problems of seeing a doctor are different here. But my experience is that if I go to an emergency room and tell them that I have GCA and am having eye problems, the emergency room takes this very seriously. I jump ahead of everybody else. My emergency room is in an eye hospital, but still.....I would hope that a UK hospital would get a bad mark on its reviews if it didn't listen to you, and you went blind. I'm not saying that you are going blind. But I am saying that the emergency room would probably want to consider it as a possibility and then TREAT YOU. Many serious GCA eye issues don't hurt. Therefore, in the US, where there is litigation when a doctor does something very negligent, the doctors jump juber to make sure that each patient has sufficient prednisone and that there is no immediate issue which calls for emergency procedures to try to interrupt a very serious problem. They can see these "issues" with the ophthalmology equipment. All they have to do is look! (DorsetLady would know), but I think that if it's immediately serious then they give you an incredibly high dose of Prednisone, (way, way more than 80) maybe even intravenously. I do know personally that some GCA eye issues, although not as terrible as is going blind, can seriously lessen your quality of life, forever. If the eye problems re-surface again I'd listen to PMRpro regarding your counterpart of our emergency room. Also, here we have a type of mail which requires the receiver to sign acknowledging receipt. Sometimes a receptionist signs, but even so if all goes badly you can prove that you were trying to get help and that the medical professionals were negligent. Therefore these types of letters get a quick review. If you have something like this type of postal service, I'd use it, or even a private company like FedEx is here.

  • The UK is not a private system with Press Ganey scores. Nor is there the same litigation culture as the USA - though it is growing.

    It is not always obvious, even from a full eye exam, that a patient has GCA. That is one of the primary problems - there is no simple way of diagnosing GCA on the spot. If there were, we wouldn't need the forum half as much.

  • Re: Diagnosis of GCA with eye exam, I understand. But when you have eye damage for any reason often it can be seen if the eye is dilated and the Ophthalmologist can use a special device to see inside the eye. So I have fear when someone has GCA and symptoms of eye damage, and it is not being looked at. You suggested something like a US emergency room as a solution. I would hope that something like an emergency room would see the patient and have the equipment to look thoroughly in the eye. I hope that Camerashy takes your advice. Anyway, thank you for telling me more about the UK system. Many in the US think that your system is better. Here absolutely anyone (guest, non-citizen, illegal alien...) with or without money can get help in an emergency room. That's one of the reasons why the hospitals have money problems, and one of the reasons why an emergency room is used by patients as a primary care service, and one of the reasons why the emergency room and hospital in general is so very expensive for someone who can pay. Better brains than mine will figure it out. Thank you for the input and correction about your system and good luck to Camerashy.

  • Yes - but an ER is not the place for a patient with GCA - it is chronic diagnosis so an ER can't deal with the ongoing problem which is by far the biggest problem.

    However - when I say that it isn't always obvious even from an examination of the retina it is because the poor blood flow may be an acute situation like a heart attack rather than chronic like angina. The blood flow to the optic nerve may be fine - and suddenly be stopped. You could have had an eye exam that was fine - and a few days later be blind. The only real sign on the retina is a swollen optic disc - due to reduced blood flow over an extended period of time. That may not be the case.

  • OK. Thanks

  • Thanks Asbeck

    Appreciate your comments but as pmrPro states we have a different culture here but that doesn’t mean we take things lying down

  • I have recently been diagnosed with neuralgia after a long period of low grade frontal headaches with pain around the eyes. Paracetamol would often help.

    I was diagnosed with GCA in Feb 2015 and the neurologist now wonders whether I had GCA in the first place. However the high dose of pred at the time certainly stopped the intense headaches.

    I've been prescribed Gabapentin for the neuralgia which has helped.

  • Thanks Ronnie 101

    It sometimes is the chicken and egg situation. I always feel I am making a bit of a fuss...but then I think of how A&E is used now ...for cut fingers, alcohol related accidents etc.

    Thanks for your response


  • Re Getting appointment at emergency eye clinic.

    Have you tried 111 service? I had rapidly deteriorating vision and a diagnosis of GCA, helpful GP on holiday and in North Buckinghamshire we can no longer self refer to eye clinic, so tried 111.

    It took a couple of hours, but I was at home, had to go through 3 levels and questions about stroke but the GP proved to be knowledgeable about GCA and made appointment at eye clinic same day. Turned out to be steroid induced cataracts!

  • Thanks exacerbate

    I appreciate your response...I too have cataracts as well as diminishing sight...I always feel as though it is the glaucoma and not the GCA, but I know this can exacerbate the condition....things not too bad at the this space

    Thanks again

  • Good if you could get a referral to a neurologist; my GCA manifested itself as occipital neuralgia with tingling extending up the back of the head. Rheumatalogist equivocated but neurologist gave firm diagnosis and pred dose was raised accordingly. If you can manage it perhaps a private consultation might be a good idea.

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