Aortitis due to GCA

[gifford7]

In some instances GCA descends to the heart causing aortitis and resulting in a thoracic aortic aneurysm and aortic valve problems. Are there members of this group with this problem? Link vasculitisfoundation.org/is...

journals.sagepub.com/doi/pd...

This happened to my sister, diagnosed with both GCA wiith vision loss and PMR in 2010, diagnosed with a heart murmer from GCA caused aortitis in 2017. She had a 5.5cm aortic aneurysm and valve regurgitation. Surgery was performed to replace the aneurysm and a bovine valve installed in 2018. Now tapering the prednisone.

I was diagnosed with GCA with vision loss nov 10, 2017; followed by GCA induced stroke 20 days later. I had a CT scan of the aorta showing no signs of aortitis. I understand those with GCA should have this scan of the aorta periodically [every 2 years?]. My prednisone now tapered to 9 mg.

[DorsetLady PMRGCAuk volunteer]

Hi,

Yes it can be caused by GCA, but most on here seems to have the “head” variety rather than the torso side of things.

The possibility (or on some cases like me the actuality) of partial or total blindness is the thing that is most talked about.

However it does say in the GCA guidelines that patients should be monitored every 2 years. Not sure that always happens in UK, I wasn’t!

[jinasc in reply to DorsetLady]

I was, every two years. Rheumy clued up............and I had previously downloaded the BSR Guidelines.

Once into remission, no more.......................

[Hidden]

Hello Gifford. I had some kind of Ischemic stroke 3 years before my GCA was diagnosed! Numb tingling on my LH side of jaw & face! Nothing serious it seemed! Could do the hands up & smile! Well! Was GCA always lurking there! Diagnosed with Atrial Fibrillation at the time & put on Warfrin. Who knows?

[Brantuk]

Hi Gifford - yes I had an aneurysm on my ascending thoracic aorta up until about 4mths ago. It had always been there slowly growing, but the advent of GCA in my system caused it to start growing quickly and it had reached 5.3cm - so they replaced about 2/3rds of my aortic arch, from the root, back in March this year. I also have another aneurysm in my abdomen which will need stenting soon, and some slight furring in my left carotid - again a stent will be required. But no heart or valve problems thank goodness. I'm currently being CT scanned every 6mths to check growth rates - plus I get a PET scan annually so my rheumy can check for inflammation spread. I'm on 9mg pred and trying to taper slowly - but should find out my CRP at the next rheumy meeting in Aug - it shot up over 140 during the op but hopefully settled back down to under 5 now (fingers crossed). It feels surreal being alive only due to plastic tubing attached to my heart - and needless to say walking down the plumbing aisle in B&Q has taken on a whole new meaning lol.

[bert403]

Hi Brantuk. .not sure if you remember, but we were chatting back and forth before your surgery. .refresh: I'm Bert403, also have ascending aortic aneurysm. I've been going to Mayo Clinic in Jacksonville FL. I'm so glad to see your surgery was successful. Last CT scan was 4.5 and holding. Going on July 16 for another scan. Interested in hearing about your [e-mail]

Gifford7...I had GCA, started at 60mg..was told 4 months after prednisone aneurysm started to develop. Ulta sounds every 3 months watching it grow. After 3 1/2 yrs and no prednisone, it seems to be stable in size. CT scans every 6 months. Good luck, bert

[Brantuk in reply to bert403]

High Bert - yes I do remember our conversation - I'm glad you're stable - I've messaged you in "chat".

[Christophene47]

Hi Gifford,

I had a temporary vision loss in my left eye for a few minutes last holiday season; ( yes, Nov. 2017 also) ; I did not panic , and vision returned on its own. ( Already diagnosed with PMR or GPA); I upped my prednisone dose immediately on my own) ; although I should have gone to emergency.

Subsequently saw a neuro-ophthalmologist who ordered duplex Doppler of my carotids and orbits; the left eye showed a central retinal vein occlusion. Carotids ok. But blood must have found another route out which does happen. I had been having temporal headaches also.

This happened while tapering prednisone. Have you recovered from the stroke? Another fear I have.. I am at 8 mg. Prednisone, so close to you in dose.

Yes, scans of chest at regular intervals important. I should also seek out a retina specialist to follow me. There is a higher risk of blindness for people like us than in general population.

Not looking forward to more tapering which rheumatologist wants to start at my next visit in August.

Best wishes to you and your sister...

[PMRpro Ambassador in reply to Christophene47]

And yet there are doctors who will tell patients that they will not develop/cannot have GCA because they are on pred and lull them (and themselves) into a false sense of security. Only if the dose is high enough - like above 30-40mg and even then that may not be enough.