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Aortitis or heart problems anyone?
#285039 08/10/22 05:45 AM
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I’ve had chest pain going back to the time when my AS started. I had pericarditis at one point. I had enthesitis in my chest. I’ve had chest pain on and off for 21 years. A few Christmas’ ago, I had a second degree block from Verapamil. Last summer it escalated and I ended up In the hospital for almost three days getting a work up that demonstrated things were okay. Go figure.

This year my AS has been brutal! Increased pain in my spine, new swelling in joints that were okay. My rheumatologist has advanced me from spondyloarthropathy to AS. I’m 57. I take meds that cause problems in the kidneys, I have a n.a. fatty liver. I’ve been on prednisone almost continuously since February.

My Apple Watch is showing weird waves. I have been diagnosed with a fib, but I haven’t had an episode for over a year. In the hope that I would find a connection between the ecg on my watch, the chest pain that increases in the terrible heat we’ve had and my AS, the search has turned up aortitis. Has anyone had it and what kind of symptoms?

I’m headed back to the cardiologist. What do I say without sounding like a hypochondriac? I had hoped my AS would burn out after menopause. Fat chance there!

Thanks,

Elaine


But hope still breathes and truth is always true.
And just when we think it’s almost over
Love has the final move
Re: Aortitis or heart problems anyone?
fall_of_moonbeams #285040 08/10/22 06:34 PM
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sorry to hear of the issues.

I don't have heart issues. I have seen studies and read (Oxford text) page 7 and page 94 of the association with AS. The association has been known for a long time, T.B. Mallory in 1936 described aortitis with people living with AS. Page 94 has a description of the issues. you can ask SAA to send a picture of that page to you.

I had also heard of 'burn out' for people. now I wonder if that was more of people becoming accommodating and familiar with living with the disease. Since I feel that way.

As for conversation with your doc, I try to remember the advice of keeping with what I am are specifically concerned about, what I'm observing in my body and what I would like to be able to do. There are some articles on this on the SAA website and a brocure chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://spondylitis.org/wp-content/uploads/2022/02/SAA2203_Patients_and_Rheumatology_Brochure_WEB.pdf

good luck!

Hope that helps.

Kindest,
Rich


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Aortitis or heart problems anyone?
fall_of_moonbeams #285041 08/10/22 07:52 PM
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Hello, Elaine:

Never be shy about being concerned about heart issues even if it turns out to be costochondritis; we get both in considerable measure! It was a heart complication from unrecognized AS that killed my mother age 42, but she exacerbated the condition because she was a smoker. Today, risk factors conspire against us and pile up as we age.

Many years ago when my AS was active, I had tachycardia along with costochondritis; thought I was a goner, as I was in a desolate place in India at the time! I was thinking what information I should leave, should my hosts find my body! Many times thereafter my AS was so severe that I would hope I would not wake up in the morning, but perhaps it was all for some purpose. And I later overcame this affliction albeit left with permanent skeletal damage.

I hope You don't have anything seriously wrong; the cardiologist is the best choice to find out,

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Aortitis or heart problems anyone?
fall_of_moonbeams #285042 08/11/22 01:36 AM
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Rich and John (it’s been awhile John!)
I’m going to look at the information you suggested Rich. I did go to my cardiologist today and saw his PA. She thought she saw something on the ekg that suggested pericarditis. She called the cardiologist who said the PA was overthinking it and my ekg was fine. The PA told me the cardio would know best. However, I’m not sure she was convinced, because she offered me the choice of a stress test or imaging of my heart if I wanted. I decided to go for the imaging because I think changes from inflammation will show up better.

Something isn’t right. I’ve not gone to the ER lately over the increasing chest pain because I’m mostly not believed when I do for heart stuff. Think it’s time to take some stuff back. I’ve been letting it flow because frankly AS does what it wants even if you do treat it. I’ve learned to live with a certain amount of pain, discomfort, uncertainty,and satisfaction that I’m doing life despite it. For a long time, after a crazy beginning, it was very quiet.

Thanks for listening to my rambles. I’m thankful to see the forums did not completely disappear the way they seemed to recently.Thanks SAA! This is probably one of the best sources of information about other’s experiences of AS. Wish you could have gotten Spondyville a place too after Spenser passed.

Elaine


But hope still breathes and truth is always true.
And just when we think it’s almost over
Love has the final move

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