Does anyone see a vascular doctor for GCA?

[achybreakybod]

Im wondering about all the different doctors people are seeing to treat GCA? I was sent to a vascular specialist who seems the best fit for GCA as it all has to do with the blood vessels. It was actually my rheumatologist who referred me to him. Does anyone else see a vascular doctor?

[DeepThought2]

I have been seeing a vascular specialist once (I am living in Germany) - for ultrasound of various arteries (subclavian, femoral, carotids, temporal arteries and abdominal aorta). That was one and a half months after start of the treatment and there were no inflammation signs visible. My rheumatology consultant who is coordinating everything said he might send me again in a year or so for follow up monitoring.

[DorsetLady PMRGCAuk volunteer]

Most people, certainly in the UK see a Rheumatologist initially - because they are autoimmune diseases- they may be referred to others, Ophthamologists or, as you say a Vascular Specialist, but not routinely.

A rheumatologist is a doctor of internal medicine who specializes in arthritis and other musculoskeletal conditions and systemic autoimmune diseases.

But from what is written on here, it seems more specialists are involved for patients in the States.Different countries, different protocols.

[PMRpro Ambassador]

Depends on the system and where you are. Many rheumatologists consider themselves autoimmune vascular specialists and traditionally are the go-to for GCA because of the common accompaniment of PMR. In some countries opthalmologists and neurologists are involved. If you happen to live in a large conurbation there may be a medical centre that is big enough for a doctor to specialise more narrowly and do vasculitis alone - for example, there are big renal units that have small vessel vasculitis specialists who branch out for large vessel stuff and other organs. But purely vasculitis specialists are few and far between.

Some GPs don't realise that the vascular surgeon isn't the right person and waste a referral - but they may work together with a physician who is a rheumatologist and does vascular medicine as was the case some years ago in Dundee. However - it all tends to depend on people's research interests and groups that form by coincidence at first and then grow.

[achybreakybod in reply to PMRpro]

I was referred to my rheumatologist who then referred me to my vascular doctor. He is amazing and has taken on my case. My rheumatologist did not think I had GCA and weaned me down on the prednisone very quickly only for me to have a relapse. After that is when I saw my vascular specialist. Note: I did not have the biopsy as this was in July 2020- right during COVID- and going to the hospital for a biopsy was not recommended. We never discussed PMR - but I am pretty convinced now that I have had it for years.

[2013mayo in reply to achybreakybod]

HiWhen I first started thinking something was very wrong with my sight and feeling ill I was seen by the eye hospital, I was diagnosed with GCA, after my second visit doc decided it wasn’t GCA, third visit changed her mind and referred me to rheumatologist. By the time I got to see rheumatologist we were all in lockdown, however I was seen on a regular basis and twice had ultra-scan for GCA, both positive.

I’ve never seen a vascular doc.

[Brantuk]

GCA is also known as large vessel vasculitis and it's always a good idea to see a vascular doctor who will note if there is any inflamation in your large tubes - particularly the aorta. As soon as my GCA was diagnosed the hospital put me through a whole series of checkups for blood flow, eye health, inflamation, electrical nerve path testing, pet scan, cat scan, ultra sound, x-rays etc etc. After one year of prednisalone the only inflamation left was in my aortic arch, a very large aneurysm just above the root of my heart. Unfortunately they had to operate and replace half my aortic arch with plastic tube. Now a vascular surgeon keeps a check on my aorta with annual scans, and I still see a cardiologist who monitors the health of my heart (which is in good shape), plus I still have periodic appointments with my rheumatologist. You really can't see enough doctors for this stuff, what with all the things that can potentially go wrong. Hope that's helpful to you.

[achybreakybod]

Yes- you are correct about not seeing enough doctors. My vascular doc sent me through all the testing you had too. Even though expensive I was grateful! So far all looks good. Glad you are doing well! Without all the testing you may have had a different outlook with your aneurysm. Continued health!