Conundrum

Morning

I had terrible pain at the base of my scull along with scalp tenderness and at the temples.

My DX was PMR/GCA and I started on 45 mg pred which was increased to 60 after about 3 /4 weeks. That was sep-18, with the support of experts on this wonderful forum I have s-l-o-w-l-y tapered down to 20 mg. I took the 60 for 2 weeks and reduced by no more than 10% at a time. Am currently experiencing a blip of a UTI and have increased back to 25 mg.

I am sure your optician will be happy to give you a thorough exam if you explain. I have found mine very reassuring.

DorsetLadyPMRGCAuk volunteer

Hi,

Any “head” issue is a concern when you have PMR, but it isn’t always GCA, and obviously we can’t confirm either way. You do need further investigation - and probably more symptoms to prove GCA. A general headache is an understatement for GCA - normally they are like no other headache you have ever had!

Higher doses of Pred are required for GCA, and yes you do wait for symptoms to subside before you start reducing. A biopsy does not always give a positive diagnosis of GCA, especially if you are already on Pred for PMR.

Good idea to get optometrist to check your eyes for any untoward signs.

Are you sure you haven’t done anything to cause the symptoms in your neck - been at a awkward angle, in a draught? Have you tried painkillers to see if they help?

Darcy2000 in reply to DorsetLady

Thanks so much ...I will follow up with eye Dr and wait for Rheumatologist appt..fingers crossed it is just a separate issue

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SheffieldJane

In answer to your final question, regular thorough eye checks are recommended, not only for any visible signs of GCA but for cataracts or Glaucoma that also can be side effects of Pred. So yes, all the tests an Optometrist can offer.

I often get quite severe headaches of the back of my skull. I was diagnosed with significant Cervical Spondylosis by X Rays. Too much time on the iPad brings it on.No headache should be ignored though.

Darcy2000 in reply to SheffieldJane

Thanks so much for your response ..will keep you posted

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PMRproAmbassador

My optician always used drops to be able to check the back of my eye - and then they see the optic nerve. It is only of value if you have chronic reduced blood flow to the optic nerve but that is at least one factor out of the way.

Once the temporal artery has been biopsied there is no more of that artery to look at. But no, you reduce the high dose of pred gradually, just as with PMR at lower doses, to find the lowest dose at which the symptoms are controlled.

The headache with GCA CAN also be what is called occipital - in the area of the "knowledge bumps" at the back of your head. That is the region where the visual processing centre is located - so if you have GCA there your sight may be at risk.

en.wikipedia.org/wiki/Occip...

There have been patients told they have "the wrong sort of headache" because it is occipital - but actually GCA favours that area! And actually, as DL says, it is rarely a "general headache" but one like nothing you have felt before although by no means everyone even has a headache. And both headache and scalp pain can be caused by muscle spasm in shoulders and neck.

So really - watch out for any other symptoms, flu feeling, sweats, fatigue, jaw pain, and above all visual symptoms. Anything visual, even just fleeting double vision or blurriness that is new, should send you hot foot to A&E.

SnazzyD

Hello, unfortunately I suspect that if you had a description of every GCA person’s symptoms you’d not be able to answer your question. The only thing I could say about myself was that it felt like nothing else I’d ever had and by that I don’t mean level of pain. Paracetamol didn’t help either. Base of skull pain was there but I have had it on and off since being under 10mg. This time it just feels different and associated with a total intolerance of poor posture and general ligament-tendon instability generally. If I have any tension in my sternocleidomastoid muscle the base of the skull shouts.

Artery biopsies are done before any steroids in the system ideally and are not done along the way; they are far too unreliable and very invasive. Some places use a specialist ultrasound. Also, someone can look at your eyes but even if they are clear of any non microscopic changes it doesn’t mean there isn’t inflammation elsewhere in the head arteries.

For now I’d have a good think about any prolonged activity holding your head up or bending over, get any tension in neck and shoulders checked out and remedied (that’s how I knew there was no flare). There isn’t a fool proof test but if you’ve had very responsive blood markers it’s worth getting them checked. Keep an eye on it, try some pain killers and get some reassurance on your eyes.

Darcy2000 in reply to SnazzyD

Thanks very much for such good information ...will keep you posted

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Blearyeyed

The eye appointment is a perfect time to have things checked and ask these questions about the occipital headaches.

There is no one answer for occipital pain , it could be PMR related , GCA relevant or non PMR/ GCA Neuralgic it Eye pain.

If you tell the optometrist about your current head and eye pain and your GCA concerns they are likely to do the most extensive tests they have available to try to diagnose your issues , or refer you as an emergency to the eye clinic or other Specialist Department to try and establish the root cause of your issue.

One thing you do need to consider before directing all your thoughts to GCA is did you suffer with eye pain , migraines , headaches or other chronic conditions , like arthritis , Fibro , neuralgia , eye pain, or chronic neck and back pain in the past.

If you did ever have these issues pre PMR , it is possible that with the stress and tension , and reduction in activity , along with steroid use that some of your pain issues are stemming from these other conditions and you may need to see the GO to discuss this and get medicinal help for those.

If you are already on drugs for a Neuralgia that may be the medication that you need to increase instead of Pred.

If you haven't tried already , you could try a standard painkiller , like Paracetamol for a few days and see if the pain responds , using a warm compress on your neck and eyes may also bring relief for non PMR pain.

Increasing your fluids and taking a full vitamin and mineral supplement , plus the Vitamin D and Calcium recommended and possibly extra Magnesium and Vitamin C may also help.

Some very slow and gentle neck rotations , and putting light pressure on the area at the base of the skull with your fingertips rotating them one way then the other , for about ten seconds at a time , then very slowly releasing the fingers , waiting about 30 seconds then doing it again , three to five times helps relieve some of the tension.

Try doing some relaxation of your muscles in general and deep breathing while laying down as well this will relieve your pain in general , and therefore reduce the tension in your head.

As others have said , although a biopsy is the usual test for GCA , if you have already been on Pred for some time this may not be conclusive. In these situations , if the right type is available they may try an ultrasound , or, just go on your eye test results and the symptoms you have to decide wether it is worth increasing your dose to a level that treats GCA.

Whatever the option they choose , as with PMR , you take the new steroid dose until the majority of PMR or GCA pain has subsided and then you begin tapering.

So, get the most out of your eye appointment and return to the GP to discuss this.

But , if you feel it's is getting worse , the headpain does not subside , you have classic scalp and jaw pain or begin to have other difficulties with your vision or breathlessness and dizziness , give yourself peace of mind and go to A and E.

Let us know how you get on next week and Good Luck.

Darcy2000 in reply to Blearyeyed

Thanks so much for taking the time to send such an informative reply....will keep you posted

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HeronNS

Just want to emphasise the comment in a post above - any visual symptoms, go right to yiour hospital emergency department. As my opthalmologist said, GCA affecting the sight is a medical emergency as serious as a stroke or heart attack and should be treated with as much urgency.