Heart issues with GCA

[phebamom]

I had my 3rd trip to ER last night. My second vertigo attack in 3 weeks. I suspect the antibiotics I have been given for adenoid infection. Had a CT scan of brain. No issues there. CT scan of chest showed mild dilation of ascending aorta and cardiomegaly, along with fluid around heart. BNP, which is a measure of heart failure and should be 100 or below, was 521 at ER visit two weeks ago. Last night it was 120.

I have had shortness of breath on exertion for several years. I also get a raspy voice when I am tired or overstressed. I suspected heart issues for years and could not get a doctor to listen.

Aorta issues are common with GCA. I had to ask my rheumatologist to do an ultrasound of Aorta. Ultrasound did not show the dilation, or fluid around heart.

I am writing this to inform all who have GCA to demand your heart be tested, really tested with an echocardiogram once a year.

GCA can attack your Aorta.

Also, do not take a proton pump inhibitor (PPI) if you have GCA. Use an H2 blocker instead. PPIs are used for acid control in the stomach, Prilosec, Prevacid, Nexium, etc. H2 blockers, Zantac, Pepcid AC.

I was on Prevacid for a year for a bleeding stomach. I did not know until a few weeks ago that PPIs prevent your body from making a chemical called Nitric Oxide. Nitric Oxide allows blood vessels to relax. PPIs can cause heart failure.

Just a heads up. If you have GCA, get your heart checked, and be very careful what medications you take, over the counter, and prescribed. The over the counter Prevacid was doing great damage to me, and the prescribed antibiotics triggered vertigo in me. Please be careful what you take.

[SheffieldJane]

Thank you for the advice. My Aorta has been thoroughly checked and only when I mentioned breathlessness. Changes compatible with my age ( only) were found so far.

No useful advice on PPI’s was given. I am troubled by varying degrees of lower abdominal pain that hasn’t got a diagnosis yet, just guesswork on the part of 4 doctors with different specialisms. We really have to be our own advocate and progress chaser.

[phebamom in reply to SheffieldJane]

Being our own advocate is exhausting. the pandemic made it worse. Now I am in the midst of these heart issues, and my area, Middle US is being attacked by a triple virus surge, Covid, Flu, and RSV.

[phebamom in reply to SheffieldJane]

I have also had bouts of lower abdominal pain. I have chronic diverticulosis so I keep a close eye on what I eat. Gentle fiber is best for us. this wicked disease does attack the digestive system. Both prednisone and Actemra thin the intestinal wall. I have been hospitalized twice, once with surgery, for small intestinal blockage (11 days with a naso-gastric tube). I believe the last antibiotic treatment for the adenoids triggered a blockage, in the same spot as previous surgery. But I ate a diet with Gentle fiber and avoided certain foods and the pain is subsiding. Pay very very close attention to your diet. For me it is cooked apples with the peeling, yummy, oatmeal, the refined stuff, not the rough stuff. During an attack I do better with cooked fiber than with raw.