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June 22
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A MyAmyloidosisTeam Member

I have the same thing. I was having lots of shortness of breath plus ache in left arm and jaw. Would only last a minute or so. My cardiologist did an angiogram after my other heart test looked just fine. He found a 95% blockage in my LAD. He said not uncommon for women to have false reading on tests. That was two years ago. I had same thing about a month or so ago and got two more stents this time on the right side of heart, never had a heart attack but blockage was very back both times. Listen to your body.

June 26
A MyAmyloidosisTeam Member

The problem is you need a doctor who agrees to prescribe. I am being seen by an Amyloidosis cardiologist at the Cleveland Clinic. He comments he " doesn't know if I will develop cardiac involvement or when. My biopsy confirmed ATTR-WILD TYPE.

June 25
A MyAmyloidosisTeam Member

Dont wait get on Vyndamax that acts as a stabilizer and Amvutra that is a silencer.

June 25
MyAmyloidosisTeam

That's a really thoughtful and understandable frustration. The honest answer is that researchers still don't fully understand why the transthyretin protein misfolds and deposits in organs like the heart in the first place β€” even though it's a protein everyone has. Because the "why" isn't fully clear yet, preventive Show Full Answer

That's a really thoughtful and understandable frustration. The honest answer is that researchers still don't fully understand why the transthyretin protein misfolds and deposits in organs like the heart in the first place β€” even though it's a protein everyone has. Because the "why" isn't fully clear yet, preventive treatment is hard to develop.

The current FDA-approved treatments work by either stabilizing the protein or reducing how much of it is produced, but these are designed for people who already have cardiac involvement. The three approved options are:

- Tafamidis (Vyndamax) β€” oral pill
- Acoramidis (Attruby) β€” oral pill
- Vutrisiran (Amvuttra) β€” injection every three months So yes, it is currently typical that treatment begins after cardiac involvement is identified rather than before. However, the good news is that research is actively evolving, with more options in clinical trials that may change this picture in the coming years.

The most important step right now is staying closely monitored by a cardiologist so that if CM does develop, it can be caught early β€” because early treatment makes a meaningful difference in slowing progression and improving quality of life.

June 22

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Chagrin Falls, OH