The last few weeks I’ve been waking with a headache. I get pain behind my eye and ear on the same side too. The top of my head hurts. Can be tender too. I’ve developed an aching on the forehead, side of face today since waking with a headache.
It’s tender there too. Can you see the dark shadow? It’s like a prominent vein has appeared there. Only noticed it today.
This has happened before. I have 2/3 similar veins on hair line. I’ve shown dermatologist before and he just said, what those veins? No relevance. But I have always thought these veins appear when I’ve got migraine repeatedly.
Frustrating!
I have systemic lupus and Sjogren’s and hypermobility.
I take methotrexate, mycophenolate mofetil, Hydroxychloroquine and Mepacrine, plus Amitriptyline and omeprazole.
Please photos below.
Thank you in advance.
Wendy
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Wendy39
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It could be. There’s nothing in what you say symptom wise that I would say definitely rules it out. You already have a history of autoimmune conditions too. Have you had any odd eye symptoms other than pain, even if fleeting? Although Methotrexate is tried as a steroid sparer with GCA, it doesn’t work for everyone. I would definitely want to get this checked out today whether by urgent GP, 111 or A&E. How old are you?
Beware of the “you’re too young” stance. Newer guidelines lowered it to 50 for diagnosis likelihood but some still believe you need to much older or that you are a birthday short. Hopefully you’ll get a bias free assessment. Keep asking for the basis of any decision and the numbers for any blood tests.
Although I have replied on your other post, will add here for completeness -
All head arteries can be affected by GCA - but it’s a bit random, so some more than others or not at all - as you can see jaw*’ top, back and temple areas also ears and obviously eyes from the ophthalmic artery which is much deeper in head so can’t be accessed. But as that feeds the optic nerve it has the most serious implications as it can lead to sight loss.
*please try the test PMRpro advised - that is, Get some chewing gum and chew at 1 chew per second for 2 - 3 minutes. Does your jaw tire or start to ache which stops when you stop chewing? If so, get medical advice as soon as you can - like today, it being Friday!
As stated as you already have an autoimmune illness, you are more susceptible to another… and don’t be fobbed off by age… it may be rare under 50, but that doesn’t mean it doesn’t happen .
See picture below, for some reason HU wouldn’t let me attach to this reply !
I couldn’t get through to my GP this afternoon, so called 111. They phoned back within an hour and after a clinical assessment I was told to put phone down, phone GP and explain 111 say I needed urgent appointment today , referred by 111.
And I got through, the receptionist said come straight away.
GP said couldn’t rule out GCA, so started me on 40mg of steroids. She’s given me enough for 4 days. Bloods booked for Monday morning.
Depending on results, she’ll consider referral to rheumatology.
The irony is she said the blood test is ESR and I said that isn’t a market for me. She could see that my ESR never goes above 16/17. Plus on Monday I’ll have had 40mg on steroids for 4 days in a row.
The ESR / CRP thing was why I posted originally earlier this week.
See you’ve replied on Lupus forum re appointment, good to hear you have a trial of Pred… hope that gives you a better weekend and see what occurs on Monday. … and yes sweats certainly can be part of untreated GCA… 🌸
I had some bloods done on Monday, yesterday morning and my GP telephoned me after 3pm with the results. Not so much my GP but the one who is handling this issue, I mean not the one I would have chosen. So she said ESR is normal - 11. So as I had seen some improvement but not complete improvement (after only 3 doses of 40mg!) she wasn't sure what to do with me. As she didn't want me to 40mg unnecessarily. She agreed to speak to a unit at my local hospital and get back to me. So she did and I was told to go straight away. It was a Same Day Emergency Care - SDEC Unit - which to me looked like it was also a Minor Injuries unit next to A&E - as all 3 were signposted to the same area - and same reception?! talk about confusing.
I saw a doctor from A&E in the end. She was lovely, quite young and prepared to listen. I said I'd been living with lupus diagnosis etc for 10 years and headaches since I was 12, now 49. This was a new type of headache symptom. Tenderness on top of my head and a painful, sore, tender vein at the side of forehead, eye, on my right side. I'd had fleeting pains through head and eye and ear (eye and ear very common for me) but overall this overwhelming feeling that an almighty headache was about to erupt at any time - although with the 4th dose of steroids on Monday, that too was easing slightly. So some improvement but not complete. She said that they still couldn't rule out GCA. Although my ESR was only 11, it's not an accurate marker for people on methotrexate, which I had never heard before and I told her about my ESR and CRP not being accurate for me anyway. She said that biopsy was no longer used for this, as it is possible to not get the right sample in the right place and get a wrong result. She said a scan was just as reliable and less invasive. She said I'd have an urgent referral to rheumatology and be seen within 2 weeks. However, she then told me that my county - Pembrokeshire, currently has no rheumatologists and therefore they are relying on a visiting one, for a day a week.....In the meantime, to stay on the 40mg of pred.
Thanks for update.. and good news that they are taking the possibility of GCA seriously... glad to hear the 40mg is helping , long may it continue...and fingers crossed you get to see visiting rheumy within the two weeks..
Not too bad then - because even without MTX up to 20% of patients have unremarkable markers which are so general anyway. Since you already know they are unreliable - hardly likely to mean much in something else are they!!!!
Mind you - does she mean MTX? Or TCZ - where ESR/CRP are definitely of no value ... Not that it matters, the result is the same.
Having the 3 "units" together is so they keep patients who don't really need to be admitted or who can be investigated within 24 hours out of the A&E to ward flow. A lot of hospitals have them now.
I am so upset angry and disappointed AGAIN, at the terrible rheumatology and lupus care here in Wales.
Dr F who saw me at the Same Day Emergency Care Unit at my local hospital phoned me., for follow up. She spoke to Dr A, who is a local rheumatologist, but running the local lupus support group I know how bad he is. He tells everyone they no longer have lupus and takes their meds away, he tells everyone they have fibro, he says post menopausal women do not get active lupus etc etc etc.
He says it’s definitely not GCA. My age (I’m 49 and risk is over 50 for goodness sake) and my history of migraine with aura (my migraines have been controlled by meds last 2-3 years or more and I've never had aura with my migraine!) and ESR at 11, definitely not GCA.
No appointment and no scan or further investigations. I'm to come off steroids from 40mg dropping by 10mg a day until off, so tapering over 3 days.
End of story. You couldn’t make this up.
I'm no expert and I am not saying that it's definitely GCA but I think my symptoms warrant further investigation and so did my GP and so did Dr F before she spoke to Dr A.
I questioned Dr F on the ESR, as she told me that ESR is not accurate when on methotrexate and her reply was that Dr A disagrees with that.
So I am left wondering what to do for the best and feeling very alone and vulnerable. I should be used to this by now, but it never fails to amaze me how shambolic care is here.
I am hoping that I can get a response from my private lupus doctor in London, re what I should be doing.
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