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I was diagnosed with an amloyd heart. I would like to know…

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I was diagnosed with...

I was diagnosed with an amloyd heart. I would like to know if there ha been anything found on this condition that could help me? I have the TTR wild type. I was diagnosed in Mayo about 1 1/2 years ago.

Doctor's Assistant: Do you know if your family has a history of heart disease? In general, how would you describe your health lately?

My heart is not in food shape according to the cardiologist I saw locally. I think I saw a Dr. Miller at Mayo.

Doctor's Assistant: Anything else in your medical history you think the doctor should know?

There is a history of heart disease in my family. When I left Mayo they asked if I would be willing to participate in a clinical trial and I said yes.

Submitted: 3 months ago.Category: Medical
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Answered in 7 minutes by:
1/5/2018
Doctor: Dr. Sohaib, Doctor replied 3 months ago
Dr. Sohaib
Dr. Sohaib, Doctor
Category: Medical
Satisfied Customers: 5,336
Experience: MBBS, FCPS Experienced in all Medical Specialities
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Hello and thank you for the question.
I am Dr. Sohaib, a practicing Internal Medicine Consultant with over 13 years of experience and I will do my best to help you today.
Let me review your question for a minute and I will get back to you.

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Doctor: Dr. Sohaib, Doctor replied 3 months ago

Still this is under investigational phase.

Several investigational agents are in active clinical trials but their clear effects on heart have not been finalized.

One of the drug named tafamidis (which stabilizes the TTR molecule and hence decrease the breakdown products that form amyloid) has been approved in some European countries for the treatment of amyloid polyneuropathy; but still not for cardiac amyloidosis --- the effects on heart have still to be validated by placebo-controlled studies.

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Doctor: Dr. Sohaib, Doctor replied 3 months ago

Two drugs ALN-TTR01 and ALN-TTR02 are in to phase 1 trial currently.

This is the only latest update that we know about this TTR variant of cardiac amyloid.

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Doctor: Dr. Sohaib, Doctor replied 3 months ago

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Customer reply replied 3 months ago
in the sense that there appears to be some new drugs available now if they are right for me??????
Doctor: Dr. Sohaib, Doctor replied 3 months ago

No, still they are not approved for cardiac amyloid; but sooner will be available after approval.

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Doctor: Dr. Sohaib, Doctor replied 3 months ago

So hopefully in coming years, you will have something curative to help your heart.

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Doctor: Dr. Sohaib, Doctor replied 3 months ago

Good luck and my sincere wishes for your good health.

Please do not forget to Click and Give 5 Star Rating (at the top of screen) to my service as this is the only way I get credit for my time and expertise on your question.
If you feel you have gotten anything less, please reply back, I am happy to address follow-up questions.
Kindest Regards.

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