had a viral Covid vector vaccine recently & six days in, I started with unrelenting head pain & temporary vision loss, so I contacted my GP & he flagged GCA. I then had inflammatory marker bloods & ct scan ( for clots) at A&E. I was handed nurofen and solpadeine then discharged without follow up.
I haven’t slept since, this can’t be right, can it,? I’m out of my mind with worry. Is it normal not to follow this up?
Sounds a bit cavalier to me - we have had several GCA patients who either had flares post vaccine or newly developed what was diagnosed as GCA soon after.
Normal blood markers does NOT mean it isn't GCA, up to 20% of patients have ESR and CRP in normal range.
What does the GP say? Where in the UK are you?
Yes I read about the 20 per cent margin and I’m really worried about it. I was in a panic whilst in A&E, so didn’t push for a biopsy or anything else Tbh, I didn’t really know what to do. I’m in rural Norfolk. The GP isn’t questioning the diagnosis, even though he flagged it up in the first place.
A&E wouldn't have been able to arrange a biopsy, it isn't conclusive either. But A&E should have been able to get advice from a rheumy.
Which A&E did you go to? Since it sounds as if your GP is supportive, I suggest you ask him to contact Dr Max Yates at the N&N for advice as a matter of urgency - and do mention to the GP that the PMRGCA community has seen a lot of flares of both PMR and GCA post-vaccine. I mention his name because we know he is good!
Brilliant thank you for that. I won’t name & shame the A&E on here but it was in Norfolk.I will travel for a good quick referral & I’m on it today. Thank you so much for the recommendation 🙏🏻
Don't feel shy about naming a poor response from a hospital - just don't name a doctor (you can do that in a private message if someone asks). But fore-warned is fore-armed and informs the choice of where to go in an emergency if you have the choice to make.
Good luck - at the very least you need those anxieties put to rest. Thank goodness for all the research and experience PMRpro shares here 🌺
Was nothing explained to you? Even a lack of raised inflammatory markers does not put you in the clear. What geographical region are you in? You need someone who really knows this disease and has a fast track for GCA.How are you ? Most important.
Can you get in to see an Opthalmologist? Even a well equipped optician? Or back to
A and E.
My GCA was diagnosed by a specialist ultrasound scan. I doubt that a CT Scan would have shown anything, but a blood clot would show.
This is at the very least, a significant side effect of the Covid vector vaccine. Or the final straw for GCA. Sorry I am just reiterating what is going through your head. I would be sleepless too until someone explained the rationale for their decision.
Do you have an emergency stash of Prednisalone? What about ringing 111?
We will be concerned for you, so let us know.
My sight is ok at the moment. I did see an ophthalmologist thank you. I’m in Norfolk and I’m trying to set up an ultrasound scan, as the quickest route to a better diagnosis. I’ll go anywhere for that. I don’t have any other meds other than the analgesics they gave me. I haven’t called 111 because I went through my GP initially but now he doesn’t seem concerned.
The temporary vision loss can be a significant warning sign for Giant Cell Arteritis. I haven’t seen this mentioned as a side effect for any of the vaccines. That and a relentless headache should have had the red flags flying. Good luck with your quest for appropriate help! If you experience any of these symptoms tonight and or jaw Claudication call an ambulance, paramedics are wonderful.
I agree with SheffieldJane that you should follow up on this. Sometimes we have to take matters in our own hands and an eye examination (with an OCT scan included-just ask for that) if you can get one tomorrow will be a good idea. Failing that, yes, back to A and E. I always thought that a visit to A and E culminated in a diagnosis; maybe I'm being naive! You can't do much tonight so try to rest: big ask when you're worried! Take care.
Trips to A&E actually often don't culminate in a diagnosis unless it is something that appears on an x-ray or CT-scan or other measurement! If you are unwell enough to be admitted they might come up with the answer but A&E tends to deal with the presenting emergent problem - and the skill of the triage person has a great bearing with something a bit vague. Heart attacks and strokes do get a diagnosis though - luckily
I will be thinking of you!
Hi . You need to be seen ASAP . I had reaction post Pfizer no 1 - first dose 6 weeks ago - I developed myocarditis / pericarditis within 2 days and also vasculitis picture presented itself - they not 100 pc sure yet if Giant Cell or Takaysus .I had to present myself 3 times to A and E - they only checked CRP in a and E - ESR not done ! When finally done was 75 ! Finally admitted with severe chest pain etc from the cardiac reaction .
Spent week and half inpatient - cardiac monitoring and all the scans for vasculitis etc .
Now on high steroids etc to cover heart and vasculitis and back to see rheumatology for longer term mgt next week. Rheumy feels that my body had huge immune reaction to the vaccine and this also flared my undiagnosed vasculitis to present itself properly !
Opthamology - eyes ok but if ANY symptoms to return immediately .
I really think you need to push this .
(My history - chronic pain for last 5 years - back shoulders / hips - investigated out the …. and nothing found !!!! My dad has PMR and GCA!!!
I’m a nurse and my husband a doctor and feeling kinda stupid now that we didn’t twig it in the last 5 years !!)
Wow!! I was sent to A & E by my GP on 11th May, admitted and put on high level steroids with suspected GCA. I already have PMR (that was the main reason they acted fast). I had the same symptoms as you post Pfizer 2nd vaccine. All bloods were normal except CRP was up slightly. Go back to your GP
Hi, Sorry to hear about your problem. Did you report this to the government Yellow Card Scheme? A full database of negative vaccine effects will help others to make an informed choice in the future, Thanks
I haven’t yet but I will
Thank you all ever so much for all of your helpful replies. So many people in my circle of acquaintance, have little or no knowledge of PMR or GCA. It’s good to hear your experiences and you’ve spurred me on to get further medical treatment- urgently . I appreciate it ⭐️⭐️⭐️
Positive A&E visit
5 hours in A&E last night, diagnosed with GCA.
A&E AGAIN!!
PMG tapering advice
Advice please
