GCA symptoms after Astrazeneca jab

[AgathaC]

I have stumbled across this site in my desperation to find out what is going on with my head ! 10 days after my first Astrazeneca jab I developed a burning headache in both temples and along my hairline. I have pain in my temples when I chew something pretty tough and ringing in my ears. I have been checked for GCA but there were no inflammatory markers in my blood and ultrasound was all clear, I have also been told that I am too young to get this (53) but we are 3 months on and still the same symptoms with no answers. Forehead feels as if I have sunburn and scalp very tender. Have people found this hard to get diagnosed ?

[PMRpro Ambassador]

You are NOT too young (over 50) and up to about 20% of patients do not have markers that are outside the normal range, whether it is PMR or GCA. Even the ultrasound will only be positive if that particular bit of artery is affected. But yes - it can be very difficult to get a diagnosis if you are anything they might consider atypical.

[AgathaC in reply to PMRpro]

Thank you for coming back to me so quickly, I’m really struggling to get this sorted.

[Dhinox in reply to PMRpro]

My GCA was diagnosed with a trip to Emergency because we knew there was something wrong, G.P. was unhelpful, As soon as diagnosis was suspected was put on high dose prednisolone, had biopsy the following day to confirm. No ultrasound. Admitted to hospital for four days. A year later condition seems to be under control, but struggling with fatigue. GCA unusual in people under 50. Am in Australia and feel this condition is not well understood here.

[AgathaC in reply to Dhinox]

Thanks for this. I’ve already been to A & E 3 times in the last 4 months ! Because my bloods are fine and my ultrasound was clear they have written me off I think. Worse this week than ever, hurts to wear my reading glasses and feels like my head is going to explode!

[RubbleTum in reply to AgathaC]

I have been to A&E thrice with this: once as an UCC referral, one GP referral and one self presentation. I get treated with a bigger pinch of scepticism each time. For me though it’s scary, confusing & keeps me awake at nights.

[AgathaC in reply to RubbleTum]

Same here. Once as a GP referral, once as a referral to Same Day Emergency Care from the walk in centre on Rouen Road and twice as a self referral. Endless and nagging doubts all along that I’m not being taken particularly seriously.

[granny-b in reply to AgathaC]

AgathaC,I live nearby, the clue being Rouen Rd walk in centre.

I understand the dilemma. Typical symptoms of inflammation markers or ultrasound have been negative ... so far.

Have you been given pain relief for the headaches?

I would be anxious in your situation.

Best wishes.

[AgathaC in reply to granny-b]

Thanks so much for coming back to me. I AM anxious but my emergency referral to the rheumatologist yesterday came in the form of a phone call with another doctor who said quite emphatically that as all the clinical diagnostics are clear it couldn’t be GCA and that burning pain is atypical. She said it sounded like neuralgia and that she will refer me to neurology and that was that. Again she kept mentioning my age. Feeling rather despondent this morning. Have you seen anyone at NNUH ? Let me know if you would like to chat directly, it would be nice to compare notes.

[granny-b in reply to AgathaC]

I will pm you.

[PMRpro Ambassador in reply to Dhinox]

It isn't WELL understood anywhere in general. There are a few very good people but they are few and far between.

[jinasc]

Where do you live? UK USA??

I looked in your profile but you have not filled it in, which is a help to get answers.

[AgathaC in reply to jinasc]

Thanks for coming back to me, I’m in theUK.

[PMRpro Ambassador in reply to AgathaC]

Where in the UK? Is one private consultation an option?

[AgathaC in reply to PMRpro]

I'm in North Norfolk, I've seen a rheumatologist at the Norfolk & Norwich for an ultrasound who scanned me for an hour back in April and said that despite my physical symptoms I couldn't have it. I'm seriously considering asking to see a private consultant. I've been to A & E 3 times ! They honestly don't know what to see to me.

[PMRpro Ambassador in reply to AgathaC]

Who did you see?

[AgathaC in reply to PMRpro]

Dr Mukhtyanar who is the top bod in ultrasound as a diagnostic for GCS but I had been on 60mg of prednisone for 6 days by then so I was on the cusp.

[PMRpro Ambassador in reply to AgathaC]

I think a "it is very unlikely" might have been a more acceptable opinion. There could be inflammation somewhere else ...

[jinasc in reply to jinasc]

I suggest you go to Addenbrookes in Cambridge and have sent you a PM.

[AgathaC in reply to jinasc]

Thanks so much for your help. I will definitely look into that.

[Grammy80]

You have gotten the best of advice already!! It took me about a year before I was diagnosed with GCA....going to Doctors in the states with the same symptoms you have. Keep at it!! and keep us posted. 💖 I've had flares when my numbers were OK.....

[AgathaC in reply to Grammy80]

Thanks so much for coming back to me. It’s galvanised me to go back in and try again!

[Frewen1 in reply to AgathaC]

I was diagnosed a year ago ... my marker levels were extremely high, despite which a week’s series of scans and tests revealed no answers until I had a PET scan. That was what revealed the inflammation. Could you ask for that?

[AgathaC in reply to Frewen1]

This is so interesting. I will definitely pursue it.

[Grammy80 in reply to AgathaC]

Good for you....in the US, GCA just doesn't come to mind...you are better armed, so stay strong. I'd never heard of GCA until I was diagnosed....If I had the knowledge of this group beforehand...I could have told the doctor~!💖

[Pollynolongerinagony]

Hello sorry to hear of your suffering. Sometimes a neurologist may see a different diagnosis with jaw chew difficulties like in rare autoimmune conditions like myasthenia Gravis. I’ve got PMR and been GCA and TAB route. It was not GCA. It Might be something to do with nerve endings ? Especially with your sun burn feeling and tenderness and tinnitus. Also I wonder if you notified the yellow card scheme of your reaction to the AZ vaccine as they are grateful for our feedback however tenuous the side affect might be. May I wish you well and will pray you find a diagnosis soon. Bless you, best wishes grandmother polly .

[AgathaC in reply to Pollynolongerinagony]

Thanks so much for this, the Rheumatologist mentioned nerve pain yesterday so they have now passed me on to the neurology department. It feels as if I’m going round in circles.

[RubbleTum]

I am in exactly the same position as yourself re onset of symptoms. My severe headache started after 6 days after the Janssen vaccine. I went on to develop blurry vision. I did get an TA ultrasound, a carotid Doppler ultrasound, a CT of the head & have had every type of eye test including a fluorescein angiography ( they all came back normal). I am now waiting to get a brain MRI. I have had blood inflammatory markers done twice ( normal range). I’m still experiencing head pain, mainly pain over & behind ears blurred vision and recently raised arteries at my temples that were not there before. I also feel absolutely listless most of the time. It has been and is still a nightmare to navigate my way through this to diagnosis. Incidentally, I was also told that I was a bit young for GCA (I’m 62). Good luck with trying to get yours pinned down.

[AgathaC in reply to RubbleTum]

This is really, really interesting. Thank you for coming back to me. I was back at A & E yesterday (4th time now) and the doctor has referred me back to Rheumatology this week. I too have blurry vision but eye test was all clear. I fear I may still have a battle on my hands as my age (53) is still working against me and my bloods yesterday were still unremarkable. Could I ask where you are ?

[AgathaC in reply to RubbleTum]

I’ve just realised that you’re in rural Norfolk too and have been attending the N & N. I think we should definitely be comparing notes on this …

[RubbleTum in reply to AgathaC]

Yes I’ve just seen this post of yours, I think we should, as we seem to be getting similar responses.

[AgathaC in reply to RubbleTum]

Hi there, I’m not sure how this site works on a privacy/confidentiality front but I would be very happy to chat further. Let me know if this is appropriate and how best we go about it.

[RubbleTum in reply to AgathaC]

I’m not sure either and likewise, I’m happy to chat and share anything that’s useful. Not sure how to go about it. Can we DM people on here?

[AgathaC in reply to RubbleTum]

I believe I may have sent you a private message on here but I’m not holding my breath.

[Rugger in reply to RubbleTum]

To send a private message, click on the other person's name and you'll get a new screen. At the top there's a 'Message' box. Click on that and you can send a Private Message that only they will see.

[RubbleTum in reply to Rugger]

Lovely, thanks for that 🙏

[RubbleTum]

You are most welcome. Although I saw a good private consultant Ophthalmic Surgeon, at the end of all of the testing all he was able to tell me that a) I didn’t have an eye problem & that b) the blood vessel supply to my eyes were not blocked. He couldn’t rule out GCA or anything else & urged me to get the other scans done. Where am I? Well diagnostically, I reckon it’s either atypical GCA, not the temporal arteries that are blocked) or optic neuritis, as I have had slight socket pain, photophobia and reduced night vision. ON can also be triggered by vaccines too & can’t always be detected by an eye exam (as the optic nerve goes from the eye, all the way to the back of the head) Geographically ( I think that’s what you meant I’m in Norfolk.