Diagnosed, how to slow progress?
I was diagnosed after carpal tunnel surgery last January. I have wild type, went through heart test, lung scans, blood tests. As of a year ago tests my heart and lungs are okay. I have a follow up appointment with the cardiologist soon. What can be done, if anything, to slow down the progress of this disease?
What questions should I ask? Thank you.
There are a lot of medications out there,ask your provider,these medications slow the progress of this disease.
I have wtATTR-cm and am asymptomatic. I’ve been through lots of tests as well.
I was told there’s no medication to slow down the progress to the heart at this time. That is depressing news.
It seems that at this time there’s no medication available prophylacticly. No preventative medicine to keep amyloids from invading the cardiac muscle. So, is the answer to be tested yearly until it’s discovered in the heart and then get medication and hope I live longer? Yes, I’m not happy about such a fate.Hi
, there are some FDA approved therapies that are known to be disease modifiers (can slow the progress of), and Gene Silencers (slows the production of the protein). You can ask your doctor about these three: Tafamidis (Vyndama), acoromidis (Atruby), and Vutrisiran (Amvuttra).
https://bit.ly/4svqoD9
https://bit.ly/4uO33xI
There is also "gene-editing" technology in testing that is hoped to be effective in removing exising amayloid deposits.
The therapies are not a cure, but they can help stabilize the protein until the cure can be found. Please let us know how it goes, discussing possibilities with your doctor. - Warmly, Donna (Team Member)
Medication
May I ask how you were diagnosed. Which specialist is best to see. I understand one has to have biopsies and special stains to confirm the presence of amyloid tissue. Is there a blood test that is simpler? Thank you.
