need help here , GCA is a large vessel vasculitis but it shows up on the temporal artery which is not a large vessel. PAN is medium vessel, but cant even find out what constitutes a medium vessel. But skin symptoms are mentioned which are small vessels.
I have my carotid external painful, hard and inflamed, it is definitely a large vessel from what I have read. Then over my scalp in a few places are smaller painful inflamed arteries, which must be medium to small.
Is there any logic to these classifications ? or is it made up by doctors as they choose to ?
Started looking at COGANS VASCULITIS because at least it covers all the blood vessel sizes, in addition to my severe inner ear vestibular and vertigo issues and some minor eye problems.
What I cant find out is why my blood pressure has gone from 118/80 before this latest flare (12 weeks ago) to 185/124 which is dangerously high. Cant find any reference to high blood pressure rising rapidly with VASCULITIS, in fact the whole list of VASCULITIS symptoms on the net or anywhere I search, seem airy fairy, with no real pattern involved
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Actually there are 2 variations of GCA - cranial which affects head arteries [not just temporal artery], and extra-cranial or LVV [large vessel vasculitis] - so it's not exclusively a large vessel vasculitis.
This is summary from a Lancet article -you need to sign to see full -
Summary
Giant cell arteritis is the principal form of systemic vasculitis affecting people over 50. Large-vessel involvement, termed large vessel giant cell arteritis, mainly affects the aorta and its branches, often occurring alongside cranial giant cell arteritis, but large vessel giant cell arteritis without cranial giant cell arteritis can also occur. Patients mostly present with constitutional symptoms, with localising large vessel giant cell arteritis symptoms present in a minority of patients only.
Large vessel giant cell arteritis is usually overlooked until clinicians seek to exclude it with imaging by ultrasonography, magnetic resonance angiography (MRA), computed tomography angiography (CTA), or [18F]fluorodeoxyglucose-PET-CT. Although the role of imaging in treatment monitoring remains uncertain, imaging by MRA or CTA is crucial for identifying aortic aneurysm formation during patient follow up.
In this Series paper, we define the large vessel subset of giant cell arteritis and summarise its clinical challenges. Furthermore, we identify areas for future research regarding the management of large vessel giant cell arteritis.
Thanks DL that makes more sense now, but I definitely have external carotid Vasculitis , it’s been the worst inflamed artery over the last few months and some also on top of my head. 25 mg Pred is not enough, it’s helped a lot but still need NSAIDs to help with headache. High blood pressure had me more worried last few days 185/124. 3 months ago I was concerned my BP was too low sometimes 90/72. How could it double in 3 months ? Can Vasculitis do this and which arteries could cause this ?
The carotid artery contains the feedback mechanism that regulates blood pressure normally, this must be screwed up somehow with me now.
Pred can increase BP.. and so can NSAIDs. In most BP meds information leaflet it says if you are taking a NSAID you should discuss with doctors as they can affect the way the BP meds work - suggest you check and see what yours say.
How is your salt intake, too much can also raise BP.
I think you need a discussion with your medical people, I'm not medically trained, and not qualified to answer.
thanks DL but my BP has almost doubled from 4 months ago when i was starting to worry it was too low.........Its more than Pred, since Pred it went up 15 on the systolic, which means it was up 40 already on the systolic when it was lowest a few months ago. Or look at it this way, my diastolic is now higher than my systolic was 4 months ago. Thats an insane change, its off the scale
Thanks DL you are a wealth of knowledge to us new to this. So my temporal artery (which was the most painful and inflamed ) has got a lot better on 25 mg Pred, the smaller arteries on the side and top of my head can now feel clearly and they are 2 to 2.5 mm thick away from the main inflamed areas. They have little nodules/balls sometimes which are not painful but can feel these “round lumps” or tiny balls beside or on top of these smaller arteries.my temporal arteries seem to be the least affected. It’s more the ones running vertically on both sides.
Have to say that’s not something I’ve come across before with GCA.. so will be interested to see what the answer is - if you get one that is!
I had the painful head/scalp and jaw claudication - but no issue with ears nor temporal artery.. unfortunately mine went deeper to the ophthalmic artery - which resulted in sight loss - preceded by extreme pains running vertically down face .
But as we often say, not everybody has exactly the same symptoms, and not necessarily what the blurb says …which doesn’t help with diagnosis.
In addition what DL has said, here is an FDG-PET/CT scan of a patient with severe GCA. Tissues appear darker the faster they consume the radioactive-glucose tracer (FDG) that was injected earlier. Any blood vessels darker than the liver are considered to be inflamed (due to huge numbers of glucose-hungry immune cells gathering). As you can see, the vasculitis causing the GCA symptoms in the head is showing up in the neck and shoulders. Milder cases of GCA (and the vast majority of PMR cases) are not so clear cut.
It MAY be seen in the temporal artery but it is so prominent because it is superficial so is seen when inflamed and is an artery you can biopsy and manage without. And large is relative. There is also a differentiation between cranial and non-cranial arteries as DL has explained.
I see what you people mean, in some ways the classification leads to confusion for the patient, but the relevance of for example ANCA positive for GPA at least gives something for doctors to go on. Lack of positive blood tests (other than ESR and CSR) make diagnosis for the other types harder and takes longer.
Altough I have been quite concerned and worried about organ damage, I believe my vasculitis is not as serious as some of these examples, but has a large effect on my life presently. Until the headache started and did not go away I could function OK day to day.
This patient story I really related to, he couldnt get a diagnosis with numerous doctor visits, even his wife didnt believe him. Ended up on 18 IBRUFEN a day just to get some relief (not good). This is the hardest part in my opion: youtube.com/watch?v=pazegLX...
18 ibuprofen tablets at what dose? That could have been worsening the headache - all NSAIDs can lead to rebound headache. But it is boring being me I just decided - as soon as they mentioned the chest problems I thought GPA ...
OK got ANCA blood tests back, P and C negetive and positive for ATYPICAL at 40. Not really sure what it means exactly, results have been forwarded to Rheumatologist.
I have GPA confirmed by numerous systemic symptoms plus highly positive PR3 ANCA test (however atypical as p-ANCA not c-ANCA). 18 months after diagnosed I relapsed with suspected GCA because of temporal artery involvement. The biopsy was negative but the damage caused to my temporal artery has caused problems ever since. My blood pressure rose early on and I’ve been on meds ever since for that. My consultant said there’s nothing to stop vasculitis affecting many different blood vessels, but there are recognisable patterns for many people, but not everybody. The main thing, as far as he was concerned, was to try and work out the best treatment plan possible. For me that has been rituximab.
Very interesting reading the posts about Vasculitis. My Dad was diagnosed with Vasculitis in 2009. His presented as micropolyangitis which in turn affected the glomerulus of the kidneys & subsequently put my Dad at end stage renal failure (stage 5) back then not very much was known & if it wasn't for a junior doctor, who was, doing a paper on vasculitis, my Dad could have died sooner. He was on cyclophosphamide & prednisolone & an anticoagulant. About 18 months into the dialysis (3 times a week for 4 hours) we started to notice that Dad had some memory concerns) after brain scan a diagnosis of dementia was determined. Could this all be linked? I believe it iwas. 4 years after starting the dialysis Dad went from dialysis to live to living to dialysis it was battering my poor Dad. Up until he was the age of 75 he'd never been ill, he was active mentally so sharp and funny. Started dialysis at the age of 76 and sadly passed away at 80. The dementia was hard to deal with (early onset) but he decided he didn't want dialysis anymore. Speaking to his nephrologist consultant he said that they were coming to the same conclusion. A few days after stopping the dialysis I got my funny & loving Dad back the dementia seemed to have taken a back seat (it hadn't completely gone don't get me wrong) but my Dad was very much there. I have read a lot into vasculitis and even now so much more is known & sure there is still a lot more to learn. Any comments or insights about my Dad's illness would be really welcome. Thank you 🤗
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