Aortitis

[Dance62]

I was diagnosed with non cranial Giant Cell Arteritis in September last year. So far I haven't managed to find anyone else with this condition because most people have the temporal version with the headaches.Mine is Aortitis which apparently is rare. I'd love to share experiences with someone else with this particular version of GCA.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome -

There’s some information under the FAQs on extra cranial GCA or LVV [large vessel vasculitus] -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

These are older posts - but doesn’t look as if members are still active on forum -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

There are current members with LVV, who will be along shortly.

[Sophiestree]

my lvv steps from my aorta. Were you diagnosed with Aortitis?

[Oxfordboy2]

Hi Dance 62,Your search is over for I too have the same condition.Depending upon which doctor I see in the hospital I am either referred to as having Aortitis or from most Large Vesesell Vasculitis.I did ask my GP who said they are both the same condition.If you would like to read my earlier posts it will give you details of my journey.I would be pleased to share my knowledge with you if you would like.

[Rugger]

I have GCA-LVV in my aorta and its branches to my arms and legs etc! I was diagnosed with PMR in 2016 and then GCA-LVV in 2019, but my Rheumatologist feels I've probably had the LVV from the beginning. A PET-CT scan in 2019 showed all the areas of inflammation.

You could look at any of my (few) posts and my (many) replies over 7+ years.

Pred is the treatment, as it is for PMR or cranial GCA.

You are not alone!

[PMRpro Ambassador]

We mostly refer to it as LVV, large vessel vasculitis. Aortitis means it is limited to the aorta, LVV covers all the versions that are affecting larger arteries in the trunk and to the arms and legs.

To be honest - LVV of any variety remains rare because many patients are simply diagnosed with PMR since they don't do the PET-CT to show where the inflammation is and the only thing they SEE is the PMR symptoms. Often a PMR dose of pred resolves the symptoms and they don't look further. There is also the problem that they can't be 100% certain it is extra-cranial GCA: GCA defines the inflammation as being characterised by the presence of giant multinuceate cells in the artery walls and that can only be shown by doing a biopsy which is a bit difficult from a major artery unless they are doing a surgical procedure.

[winfong]

I have it as well. Just to add to the name game, I usually call mine extra-cranial GCA. That seems to be what it most often goes by in the medical literature at least.

In particular, I had involvement with my aorta and thoracic arteries.

[SheffieldJane]

My story is similar to Rugger’s, we even have the same doctor. There is a little damage to my Aorta so I am monitored annually by a Cardiologist. My presenting symptoms, apart from the usual fatigue and malaise are PMR like. I am still alert for any eyesight issues and see my great optician every few months to monitor my eye health - this is recorded on slides for comparison purposes. Happy to discuss any particular issues with you. I was diagnosed with PMR in 2016 and the LVV/GCA was discovered 4 years later during a Vascular Ultrasound Scan. Although I have a minor leaky valve in my Aortic valve it has never been referred to as Aortitis. I see the Cardiologist next week, I will ask them. Just like Rugger, our Rheumatologist believes that this condition has been present all along and has contributed to a difficulty in tapering at lower levels. Unlike Rugger who had success, the drug Actemra, although helpful in enabling a rapid taper from Pred has caused or made worse a tendency to diverticulitis so I had to come off it. It is my belief that this condition often goes undiagnosed.

[DeepThought2]

Dear Dance62, I was diagnosed in 2021 with large vessel vasculitis affecting aorta and the arteriea subclaviae. My main symptoms were low fever, malaise and slight weight loss, which all disappeared upon treatment.

[Nagswoman]

Me. You are not alone.

[winfong]

Has anyone used us as a source for research? I know it's a rare condition, and a number of articles I've seen have been more along the lines of individual case studies. I'd think we'd be a great source for a surveys, multiple interviews, etc.

[SheffieldJane in reply to winfong]

Yes, we occasionally get asked. I have done more through my very active Rheumatologist, for her team’s research though. We can only spread the word, I agree, we are a rich source for research.

[Rugger in reply to winfong]

Yes, like Jane, I contribute to research via our shared Rheumatologist. One time, I had 10 vials of blood taken for research - a whole armful! 🤣

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

Now where have we heard that before..🤣😂HHH.. always used to think of that was I was a blood donor.

[PurpleDanza]

Hi. I was diagnosed with vasculitis in January this year. Mine appears to be non cranial too. It is my aorta, and a branch to my right arm and possibly one to a lung, left side. I wasn’t given a common name for its type other than vasculitis. So your question has helped me immensely. Thank you. Thank you too for all who’ve replied. Lots of reading up to do now.

[Allotmental]

...and me too. Diagnosed April 2021.

Vasculitis UK is a great source of very reliable information and support. If you haven't done it already, take a look at their website and do contact the Helpline if you want/need to

[Smellydog9]

I also have LVV. I have PMR and GCA symptoms but I also have leg claudication pain which comes on if I walk for a few minutes. I’m on prednisone and now tocilizumab but so far this pain hasn’t settled. I manage to work with it most of the time but it is quite frustrating.

[pegpowell in reply to Smellydog9]

Your leg symptom sounds like peripheral arterial disease (PAD) which a vascular surgeon could diagnose. I take Cilostazol that eases the leg pain and a statin, Rusuvastatin, to reduce the cholesterol that clogs the leg artery. Daily walking, now possible, is included with the medications.

[Smellydog9 in reply to pegpowell]

Apparently with LVV the claudication is caused by narrowing of the arteries due to inflammation. I don’t have cholesterol blocking the arteries so it’s treated by trying to reduce the inflammation. I was advised not to try to walk through the pain but to try walking further once there was improvement. Not at that stage yet but hoping.

[Rugger in reply to Smellydog9]

My LVV was diagnosed (by PET-CT scan) when I complained that my legs "wouldn't go"! Once I was started on Tocilizumab (+pred) there was no stopping me!

[Smellydog9 in reply to Rugger]

I’ve had 3 months of tocilizumab and still on prednisone. Not noticing a great improvement in leg pain yet but still hopeful.

[Rugger in reply to Smellydog9]

I hope you see some improvement soon. I feel fortunate that the TCZ dealt with my inflammation - such a pity that we are restricted to a year's supply in England. I hope that might change.....!

[Smellydog9 in reply to Rugger]

Thanks. I think I will need something in the longer term but let’s see what happens.

[discoballs in reply to Smellydog9]

I am getting leg pain too. Both legs. More like aches....

[Missus835]

What are your symptoms please as I suspect non-cranial GCA may have reared it's ugly head?

[Jbobby]

I too have GCA/ LVV which, I think , puts you at risk of Aortitis. Or does it simply mean I have it? I feel uninformed and wd like to know more as I recently have been having back pain and slight jaw pain and very very slight and occasional heart racing and feel I need to check inflammation in aorta. (Am seeing doctor later). I don't know what symptoms youre having but would be interested to know. And wonder what dose of Pred youre on at the moment...

[DorsetLady PMRGCAuk volunteer in reply to Jbobby]

For more info on LVV read the first 3 links in this reply - healthunlocked.com/pmrgcauk...

[Jbobby in reply to DorsetLady]

Thank you DL. I’m still confused as to what I shd expect with LVV/GCA. It seems I get symptoms of both cranial and LVV types of GCA. Anyway, soldiering on and doc booking ECG and getting rheumy on to it again although I’ve not a lot of confidence in him. Still, I guess he knows his stuff even if it doesn’t exactly apply to me!

[DorsetLady PMRGCAuk volunteer in reply to Jbobby]

Not sure any of us really ”know” to expect.

What symptoms have you got/had?

[PMRpro Ambassador in reply to Jbobby]

You get "your" symptoms, for "your" version of LVV/GCA, every single one of us is a bit different. I suppose that is what confuses a lot of doctors who have this image of PMR/LVV/GCA and expect everyone to conform to it, or maybe to them! Unfortunately, without constant PET-CTs, you can't monitor the inflammation easily if your blood markers don't play ball, you have to go by your symptoms and aim of optimal management of them. Constant PET-CTs is not only expensive, it would put quite a radiation load on you.

If your LVV is affecting the arteries between the heart and the head, including the carotid artery, then you may well develop symptoms of poor blood flow to the head without any further arteries in the head being affected. I think that many LVV patients are likely to show GCA/PMR symptoms whereas patients with PMR or GCA don't necessarily show symptoms of LVV even though a lot probably would have 2 out of 3 if the scans were done.

[Jbobby in reply to PMRpro]

Thank you PMRpro. thats very clear. Yes, Im sure youre right. many more people wd be showing more if scans were done. I think poor blood flow to the head cd be my thing. At times. I don't know if abdominal ultrasounds show anything useful, like if the aorta is inflamed at that level (between heart and head)....and if thats worth checking🤔.

[PMRpro Ambassador in reply to Jbobby]

ncbi.nlm.nih.gov/pmc/articl...

says that u/s has limited access to detect aortitis - those pesky ribs get in the way I imagine! They say half of GCA patients probably have LVV - that is a lot of potentially undetected patients.

[Jbobby in reply to PMRpro]

Ah OK, thats interesting. thank you so much. Yes, those pesky ribs!

[Sharitone]

LVV - me too! Very tiring! A little bit difficult to deal with because, as others have said, it only shows up on scans. So when PMR is flaring, you have no idea what is going on with the LVV.