GCA (2018)to FMD(2024) Yikes!

[Blurry62]

Hello good people. I was diagnosed in Feb, 2018 with GCA and am happy to report that I'm in remission. Last month I had arterial scans done and they came back-much to my delight- with no signs on active inflammation or aneurisms. There was, however, what they term an incidental finding by the name FMD ( Fibromuscular-dysplasia ) attacking carotid arteries on both sides of my neck. The cardiovascular specialist and rheumatologist said FMD is not related to GCA, nor is it inflammatory in nature. None the less, I've learned over the years that medical care doesn't always have the full picture of the situation on the ground where we live. I'm wondering if anyone else has gone on to FMD ?

Still going to be monitored for beading (aneurysms).

I'm still on 3 mg of prednisone and hesitant to reduce any further because I don't feel up for the fight just now.

Thanks to all who respond.

Blurry

[PMRpro Ambassador]

Honestly can't remember anyone mentioning it before

hopkinsmedicine.org/health/....

Seems strange they don't think there could be a possible link to GCA - they affect the same layer of the artery wall I think. But it mostly manifests in under 50s - unlike GCA which is mostly in over 50s

[Blurry62 in reply to PMRpro]

Yes; I agree with you. There was discussion about tracking their GCA patients to determine what number go on to develop FMD. FMD isn't an inflammatory disease (unlike GCA) yet has an absolute autoimmune component. ( Like GCA) Not sure what to think, so jumped on here to see if anyone weighs in. Thanks

[PMRpro Ambassador in reply to Blurry62]

Obvously some older patients develop it - but the literature seems confident it is a disease of younger patients who are less likely to have had GCA previously. Though they may have, just not diagnosed, But there is always the other way round - does FMD provide a weak spot for GCA?

[Blurry62 in reply to PMRpro]

Don't you love "Confident Literature" lol There has to be a connection; two rare artery diseases? mmmmmm

[Kt1943]

Hi there. I was diagnosed with FMD in my carotid arteries in 1984 when I was 40. (It does seem to be younger folk) I did not have any indication of GCA till 2021 when A temporal biopsy confirmed the diagnosis of GCA. The symptoms were classic GCA, terrible headache, sensitive scalp, jaw claudication and loss of vision. The FMD was discovered back in 1984 as I was having TIAs at the time, no symptoms that were similar to GCA symptoms. I am still going strong 40 years later. We keep an eye on the FMD but there has been no reason to pay more attention to it. Initially I was on blood thinners but now down to low dose aspirin. I know it sounds alarming but try not to be overwhelmed by the new finding. All the very best. I know how upsetting it can be to get a new diagnosis added to the mix,

[Blurry62 in reply to Kt1943]

Thanks for responding to my post. I acquired GCA -younger than normally seen- at 60 and now have FMD later in life at 67. Interesting, isn't it.....I don't think they would have missed the FMD in the past as I've been having regular scans of the carotids along with yearly MRA since 2018.

Thank you for the encouragement. I'm doing okay with the diagnosis. GCA is such an ordeal--Having gone through it--helps me cope with this round. I'm sure if high doses of prednisone were prescribed, I would be in much greater distress, but yes--it is definitely concerning.

Thanks again!

[PMRpro Ambassador in reply to Blurry62]

"younger than normally seen- at 60"

Not really - there have been plenty on the forums in their 50s. An "average age" is what it says it is, some older some younger to get the average ...