GCA and aorta and brain aneurisms

[Vikinga]

Hello all,

After having PMR for 3.5 years, I had an appointment with my ophthalmologist, and I mentioned to him a I had a moderate discomfort in my jaw. He immediately ordered a temporal biopsy which was positive for GCA. I never had headaches, scalp tenderness or vision problems. I was assigned a rheumatologist who prescribed me 60 mg of prednisone for 5 weeks and then to taper it according to a schedule he recommended. Dorset Lady and PMRPro were very helpful with my prednisone tapering. What a fantastic forum you have! On September 13, when I was on 9 mg prednisone/day I developed symptoms of Covid 19. The local Hospital Emergency Dept. prescribed Paxlovid plus the addition of 5 mg of prednisone for 5 days. Everything went well but after Covid I started having erratic throbbing pains, of less than a minute duration in my temporal arteries running along the front of my ears. Also some headaches and erratic pain on the area above my left eye, of short duration also. Long Covid effect?

My rheumatologist is an arrogant, abusive person that does not listen to my concerns. He thinks that those pains are not symptoms of GCAI am worried about aneurisms in my abdominal and thoracic aortas and also in the brain.

After this long story, I an wondering if there is a high incidence of aneurisms developing in people with GCA?

Happy New Year All

Vikinga

[DorsetLady PMRGCAuk volunteer]

Hi,

If it’s extra cranial GCA, also known as LVV [large vessel vasculitis] then yes aorta is affected - and there is always a possibility of aneurysms.

intechopen.com/chapters/76667

But increased headaches are also mentioned as a symptom of long covid…

Any chance of seeing another Rheumy who would take notice, and maybe worth discussing situation with GP…

Picture shows overlap of GCA/LVV/PMR

GCA etc areas

[Vikinga in reply to DorsetLady]

Hi DL Thanks for your reply, I hope to be able to see another Rheumy, which is is very difficult. I have discussed my problem with my GP but is hot helpful either.

I just found out that there is a private clinic where I could get MRI's of the brain and aortas. Do you think that MRI's are reliable for the detection of aneurisms?

Vikinga

[DorsetLady PMRGCAuk volunteer in reply to Vikinga]

I’m not medically trained, but looking online it’s one method, or a CT scan - sure PMRpro can give a more precise info when Europe wakes up -I’m in NZ at the moment…

[PMRpro Ambassador in reply to Vikinga]

I think MRI or CT would identify an aneurysm that hasn't ruptured but diagnosis is usually with angiography of some sort - adding a dye that makes the outlines of the blood vessels more obvious.

Where are you? Your profile doesn't tell us anything and it is very useful to know because things vary from country to country.

[Vikinga in reply to PMRpro]

Hi PMRpro I m in Canada where GCA is relatively unknown by most GPs and my Rheumy does not seem to have much experience. He just go by the book which is useless regarding tapering prednisone. Finding a competent, reliable Rheumy is a real challenge.

Vikinga

[PMRpro Ambassador in reply to Vikinga]

We know - several Canadian members and some have really hair-raising stories. Some even worse than the UK!!!

[random901]

Yes, Vikinga. My thoracic aneurism was probably caused by undiagnosed GCA. Major heart surgery. I hope you find a more acceptable rheumy very soon!

[Vikinga in reply to random901]

Thank you random 901. That is exactly what I am afraid of, to have undiagnosed aneurisms that require major surgery.

I appreciate your comment!

Vikinga