Wild-type ATTR Amyloidosis (ATTRwt): What meds help you?

Posted by markwithwildattr @markwithwildattr, Mar 14 10:40pm

Just diagnosed with wild type ATTR at 67. I have been prescribed Attruby . My only symptom is tingling in my fingers so I’m hoping it was caught early . My understanding is this drug stops the creation of the misfolded proteins created in the liver . Is there a drug that dissolves the protein already in and around the heart as seen on my echocardiogram?

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Colleen Young, Connect Director | @colleenyoung | Mar 23 4:20pm

I'm tagging @robertreidrx @jam5 and others who have experience with Wild-type ATTR Amyloidosis (ATTRwt) to join this discussion.

@markwithwildattr, how are you doing on Attruby (acoramidis)?

chrissteyn51 | @chrissteyn51 | Mar 24 7:00am

Would like to know what type of medication are prescribe for AMYLODOSIS ATTR

Colleen Young, Connect Director | @colleenyoung | Mar 24 12:16pm

In reply to @chrissteyn51 "Would like to know what type of medication are prescribe for AMYLODOSIS ATTR" + (show)

Welcome, @chrissteyn51. I moved your question about medications for amyloidosis ATTR to this existing discussion to connect you with @markwithwildattr and others.

- Wild-type ATTR Amyloidosis (ATTRwt): : What meds help you?https://connect.mayoclinic.org/discussion/just-diagnosed-with-wild-type-attr-at-67/

Is this a new diagnosis for you? What treatment(s) have been recommended for you?

markwithwildattr | @markwithwildattr | Mar 24 12:57pm

In reply to @colleenyoung "Welcome, @chrissteyn51. I moved your question about medications for amyloidosis ATTR to this existing discussion to..." + (show)

Yes I was just diagnosed the first of Febuary. My cardiologist has prescribed Attruby which i was approved for . There is a study going on here in Houston at Methodist and Baylor St. Lukes caleed the Crispr Cas 9 study which I am applying for.

markwithwildattr | @markwithwildattr | Mar 24 7:53pm

In reply to @colleenyoung "I'm tagging @robertreidrx @jam5 and others who have experience with Wild-type ATTR Amyloidosis (ATTRwt) to join..." + (show)

My amazing cardiologist linked two small symptons of bilateral carpal tunnel and a small skip on my EKG prompting her to schedule a PYP scan . Im feeling fine otherwise and have been taking acoramidis for 5 weeks now. I'm hoping to enroll in the MAGNITUDE study (CRISPR/Cas9) sponsored by intelliatx.com/our-science/ as it is a 1-time intravenous infusion that goes directly to the liver and finds the TTR gene and knocks it out.

chrissteyn51 | @chrissteyn51 | Mar 24 11:57pm

Good day. Is it possible to also inroll in the Magnitude study? I am in South Africa. The protean already thickened the casing of my heart. Thank you for the reply

chrissteyn51 | @chrissteyn51 | Mar 25 12:15am

In reply to @colleenyoung "Welcome, @chrissteyn51. I moved your question about medications for amyloidosis ATTR to this existing discussion to..." + (show)

Good day. Yes the cardiloog identify this protean last week. I do not use any medicine at this stage. Live in South africa and doctor said this medicine is very expensive.

chrissteyn51 | @chrissteyn51 | Mar 25 12:31am

Hi Mark. Did you perhaps find a drug that dissolve the protein around the heart? Thank you.

chrissteyn51 | @chrissteyn51 | Mar 25 1:55am

I saw Vyndamax prevents the formation of harmful amyloid protien deposits in the heart

jam5 | @jam5 | Mar 25 7:33am

In reply to @chrissteyn51 "Would like to know what type of medication are prescribe for AMYLODOSIS ATTR" + (show)

Have wild type ATTR and have been prescribed Tafamidis 61mg every day

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