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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How Is The "progress" Of Amyloidosis Measured? I've Been On Vyndamax For 2 Years. What Should I Be Looking For?

A MyAmyloidosisTeam Member asked a question 💭
Tampa, FL

My Amyloidosis Diagnosis came after various Hear Issues...Afib, Aflutter, Heart Blockage. I have 3 stents, and ICD Implant and I'm on Sotolol to control Heart Rate. This in addition to Blood Thinners, etc.

September 14, 2024
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A MyAmyloidosisTeam Member

If you read the Vyndamax Patient Information that comes with the meds it says that using vyndamax reduces mortality and hospitalizations. I'm not certain of the statistical significance though. Not my strong suit. Perhaps others can weigh in?

September 15, 2024
A MyAmyloidosisTeam Member

So very true Joel! See you on the 5th.

September 15, 2024
A MyAmyloidosisTeam Member

I have had to accept the unpleasant reality that maintaining my current health, strength and stamina is a notable accomplishment and that exercising as hard as I want to is actually counter-productive. I understand that Vyndamax halts disease progress but doesn't reverse damage, or at least only allows normal bodily processes to help very slowly. One man's opinion....

September 14, 2024
A MyAmyloidosisTeam Member

The progression of AL amyloidosis is measured using various tests and biomarkers. Here are some key points:

- Biomarkers: Blood or urine tests measure molecules that indicate disease presence. For heart damage, biomarkers include
- NT-proBNP: Produced by the heart when it starts to fail.
- Cardiac troponin T: Show Full Answer

The progression of AL amyloidosis is measured using various tests and biomarkers. Here are some key points:

- Biomarkers: Blood or urine tests measure molecules that indicate disease presence. For heart damage, biomarkers include:
- NT-proBNP: Produced by the heart when it starts to fail.
- Cardiac troponin T: Indicates heart muscle damage.

- Imaging Tests: Echocardiograms or MRIs monitor heart size and function.

- Symptoms and Signs: Look for:
- Enlarged tongue
- Swelling in legs
- Heart issues (e.g., heart failure, arrhythmias)
- Digestive problems (e.g., acid reflux, nausea, diarrhea)

Since you are on Vyndamax, which is used for treating heart disease related to amyloidosis, monitoring heart health is crucial. Regular check-ups with your doctor to assess these biomarkers and symptoms are essential.

September 14, 2024

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