I am a newbie here. I have been diagnosed with extracranial GCA because a PET scan showed FDG uptake along the aorta "concerning for aortitis". I have no cranial symptoms and no joint issues so I am skeptical of the diagnosis, especially since other imaging for GCA was negative. The odds of a 62 year old male having extracranial GCA with no temporal headaches is pretty slim but I went along with the diagnosis due to the possibility of blindness and prednisone treats (non-infectious) aortitis even if it is not due to GCA. 60 mg of prednisone dropped my SED and CRP from over 100 (usually indicative of infection, not autoimmune illness) to normal almost immediately and made me feel great generally but it did not eliminate my back pain completely although it did help. Turns out I did have an infection which was successfully treated with antibiotics but my SED and CRP remained somewhat elevated and I did have some odd muscle stiffness but infection symptoms can be similar to autoimmune/rheumatoid symptoms (they both involve the immune system).
My story is very long and complex so I'll just ask if anyone here has experienced severe mid-back pain with aoritits. Doctors are very skeptical that I could have had aortitis for 12 years without major complications but the path of the aorta seems to correspond to where my thoracic pain originates. It feels like I have a knife in my back, just left of T10/11. The pain also radiates forward to my xiphoid process (below the sternum). I feel like the pain is coming from somewhere in between these two spots, just left of center in my thoracic region.
I've read of members here having chest pain with aortitis. Anyone have severe mid-back pain? Any thoughts on the possibility of having painful aoritis for 12 years with no aneurysm and no symptoms other than pain for the first 10 years?
Thanks!,
Billy G
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BillyScreamingGoat
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Hi and welcome, Can’t help on your specific question, but others will.
But just to clarify if you have extra cranial GCA or LVV as it’s sometimes referred to -Large Vessel Vasculitis -then your temporal arteries won’t be affect -that would be cranial GCA -see picture attached -
Green outline is Cranial GCA, Red outline is Extra-Cranial GCA (LVV).
Sorry for the delayed response. The PET scan showed FDG uptake along the aorta and aortic arches "concerning for arteritis/large vessel vasculitis, especially considering patient's elevated inflammatory markers". I do realize that extracranial GCA only (without cranial GCA) is being diagnosed more now. Maybe I'm too skeptical of doctors and imaging but it comes from 12 years of them being wrong and telling me things that just aren't true and missing a large hole through the middle of my left ab muscle. I've been told not to depend on any single test and multiple other imaging (TEE, angiogram, CT, stress test, etc) did not detect any issue. The angiogram actually said "no evidence of GCA") but I realize a PET scan can detect things that are missed by other imaging.
Thank you for your response. Some others also responded with helpful information and I'll respond to them also with more information. I can write forever because there are so many pieces to my puzzle but I try not to because it gets overwhelming to the reader. Thanks again!
" I have no cranial symptoms and no joint issues so I am skeptical of the diagnosis"
Extracranial GCA means the GCA is in other places but NOT within the skull - there would be no headache expected. In LVV/extracranial GCA the high dose of pred is to reduce the inflammation in the aorta - since that too is causing considerable damage which predisposes you to other problems later. It also leaves you at serious risk of an MI or stroke in the first year after diagnosis.
Why would you expect joint issues? GCA affects arteries and not joints.
is a detailed discussion of the spectrum of GCA in both its forms and PMR. Extracranial GCA is often also referred to as large vessel vasculitis. Dejaco points out that although a lot of patients will have inflammatory arthropathy, by no means all do - half of patients at least will have no joint involvement,
If you had a PET-CT they will have seen very clearly where the inflammation is sited.
Sorry for the delayed response. Oh bummer, it sounds like do indeed have LVV/GCA. Thank you for clearing up some of my misconceptions. They tell me it's unlikely I've had it for 12 years (I first had PMR/GCA symptoms just 2 years ago). My 12-year chronic pain overshadows everything due to its severity. I was hoping they finally found the source but it seems like they are probably separate issues or maybe indirectly related (I've had chronic thoracic inflammation for 12 years so maybe that created LVV/GCA). Sigh.
Autoimmune disorders make their own rules - and I think they are all linked to some extent. What label they give you still relates to old-fashioned disease definitions and symptoms but as technology improves they find similarities and differences - resulting in changes of definitions and labels and things like UCTD and MCTD - undifferentiated and mixed connective tissue disease, neither one thing nor the other or mixed bits of everything. You may have BSG syndrome - special to you ...
Dear Billy. I was also diagnosed extracranial large vessel vasculitis (LVV) and I had also no headache or other classical GCA symptoms but mainly malaise, low fever and a feeling of really being ill (generalized symptoms). ESR > 100, CRP 60-80. An extensive infection screening was performed (including exotic things such as Q-fever, Psittacose) but nothing was found. Vascular MRI was negative as was ultrasound imagery. Only the PET-CT showed Increased FDG uptake in the Arteriae claviculae and femoralis and in the ascending aorta. I never had any back pain - it is just to show that with LVV symptoms can be quite different compared to classical GCA.Just a link to a scientific paper where a patient with thoracic back pain and Takayasu aortitis is decribed
Thank you DeepThought2. It sounds like your situation is very similar to mine. We had very similar symptoms as well as similar SED/CRP values. 60 mg of prednisone and Actemra made me feel much better and did reduce my thoracic pain some but now that I'm down to 10 mg of prednisone the pain is worse than ever. Other than that I feel fine and my SED/CRP are way below normal. You guys are convincing me that I do indeed have LVV on top of my chronic pain. Probably two separate issues but I can't help but suspect they are somehow related as my pain seems to originate from the location of the aorta. At least the LVV is treatable. Best of luck to you and thanks again for your response!
Hi I'm not an expert as newly diagnosed so listen to the wonderful experts on here but this is my journey so far which may help ? Started on 40 mg beg of July as there was concern i had gca. When that was ruled out doctor tried to reduce dose a week later to 15mg. That brought everything back with vengeance so she put me onto 30mg with a view to taper. However I got covid which seems to have caused the fatigue and inflammation to take longer to settle so still on 30mg. ive fad a full week of pretty much no pain. Fatigue is still an issue! So going to begin taoering shortly but only reducing by 2.75. And doing that slowly too. Hope you get sorted.
Thank you for sharing your journey. I may need to go back up too, if only to reduce my pain which is really the only symptom I have now. I probably have fatigue but since I'm so hyper naturally I don't notice it and when my pain is really bad I seem to get even more hyper, probably due to increased cortisol/adrenaline or maybe just panic. I hope everything clears up for you.
I also have/had GCA and PMR (going on 4-yrs and maybe done with it), but my GCA is/was temporal. Large doses of prednisone can cause acid reflux which often produces mid-back pain that circles around to the chest.
Not really. Mine, though, might be a little different than yours. probably not as sharp, and more periodic. I also have PMR, so I get the hip cradle pain and pain across the shoulders. I definitely get the mid-back pain though.
Thank you all for your extremely helpful responses. After reading them I'm more convinced that I do indeed have LVV and possibly GCA. I'll read the articles more carefully. I just wish the treatment had as much effect on my pain as it did all my other symptoms and inflammatory markers. Probably two separate issues since they tell me it's unlikely I've had untreated GCA for 12 years. They also doubt I've had aortitis for 12 years without a major issue like an aneurysm. 60 mg of prednisone did reduce my pain some. I can't help but think there's some connection since it feels like the pain is originating from the area of the aorta. Maybe I developed an autoimmune illness from 12 years of chronic thoracic inflammation. My pain is so severe it overshadows everything else. I suspect PMR or GCA started 2 years ago because I suddenly came down with malaise, a low fever and a variety of body issues, especially stiff muscles in the back of my legs. Anyway, thanks again. What a great community you have here!
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