Cardiovascular issues

[winfong]

Anybody out there with extra-cranial GCA / LVV, have any cardiovascular issues? I was having some shortness of breath, sleepiness & lightheadedness. I'm in the middle of testing for that, but a CAT scan showed I have a dilated aortic root and pericardial effusion. Those explained my symptoms, but neither of them sounded good. Anybody else in the same boat?

[random901]

Hi winfong! I went to GP May 2022 with extreme breathlessness and fatigue and had a week's antibiotics for "chest infection" which failed to improve things, I was sent to cardiac clinic. Immediate trip to A&E, put in Recuss! It was a thoracic aneurism. June 2022, major heart surgery where the aorta was reinforced. I kept telling hospital I had fibromyalgia causing acute pain after my op. October 2023 - returned to GP with fatigue and sharp earache. Diagnosed GCAPMR by Rheumy 2 weeks later. I am convinced the cause of my heart trouble was undiagnosed GCA. This is being followed up by an interested Registrar who is going to examine the blood tests I had whilst hospitalised. Please get any breathlessness checked!

[PMRpro Ambassador]

Aortic aneurysm (same thing as your dx) is a known longterm consequence of GCA

ncbi.nlm.nih.gov/pmc/articl....

and patients should be monitored every couple of years to see of there is an aneurysm forming. They rarely are.

Found early enough and rectified a full recovery is to be expected. Better to know than not.

[Blackcat1M in reply to PMRpro]

I suffer with breathlessness since having my heart attack was told by the cardiologist oh it’s the medication .

[PastelsinArt]

Hi Winfong, I had an echocardiogram last week which showed I have a dilated aorta. My GP started me on Amlodipine because my BP is high and if this doesn't work my rheumy recommends that a med which acts on the reninagiotensin system could be added (I'm quoting from her letter as this is beyond my knowledge!)I've had PMR and GCA for 4 years. I'll see the GP in a few weeks and take a week's worth of BP readings with me.

[PMRpro Ambassador in reply to PastelsinArt]

They are called ACE inhibitors, They started me on an ACE inhibitor here - amlodipine hardly ever gets a mention here - and after a couple of days I developed a VERY itchy rash around my neck which proceeded to spread further and further, No-one wanted to know on the ward, it was dismissed as heat rash, until the weekend duty consultant appeared on the Saturday morning and I told him. HE took notice and stopped it immediately - it was an allergic reaction!

[PastelsinArt in reply to PMRpro]

I will proceed with caution! Hoping Amlodipine works 🤞

[PMRpro Ambassador in reply to PastelsinArt]

It usually works - but can have side effects. I think the rash with ACE inhibitors is pretty rare - but when it happens, don;t ignore it!! They put me on Losartan and bisoprolol, both low doses, No problem at all. Now only in the bisoprolol - no idea why they changed it!

[winfong]

Turns out it was low potassium and chloride. HCTZ and Lasix at the same time we're depleting both, with symptoms such as fatigue, dizziness, shortness of breath, edema. My endo found it.

[PMRpro Ambassador in reply to winfong]

And your GP wasn't doing regular blood tests?