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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chrissteyn51 | @chrissteyn51 | Mar 25 1:29pm

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

Good day. Yes a new diagnosis and did not start yet with any medication.

phillipdobrien | @phillipdobrien | Mar 27 9:14am

I have Carpal Tunnel, lower back pain (mostly in the AM) & numbness in my left hand. I won't be home until mid-April to see my doctor but would appreciate any advice. Thanks to all for posting.

phillipdobrien | @phillipdobrien | Mar 28 8:31am

In reply to @chrissteyn51 "Good day. Yes a new diagnosis and did not start yet with any medication." + (show)

Thank you & good luck ! Please post if & when meds are prescribed. Thanks again !

phillipdobrien | @phillipdobrien | Apr 26 8:32am

I have had shortness of breath, lower back pain (typically in the AM) & Carpal tunnel syndrome for about 6 months & just had a nuclear stress test (no treadmill because of Afib). The test came out fairly normal. Is the stress test a good way to discover ATTR or should I ask for a different test/treatment?

markwithwildattr | @markwithwildattr | Apr 26 2:17pm

In reply to @phillipdobrien "I have had shortness of breath, lower back pain (typically in the AM) & Carpal tunnel..." + (show)

If you have bilateral carpal tunnel that is a red flag for ATTR. I had a stress test ( treadmill ) 6 months prior to my diagnosis and that showed nothing . A PYP(pyrophosphate) scan is necessary to detect the misfolded proteins being createsd in the liver and will show where the fibrils are deposited in your body. I have cardiac amyloisosis and there are deposits in my left ventrical which makes the heart have to pump harder to circulate blood through the body.

phillipdobrien | @phillipdobrien | Apr 26 7:51pm

Thank you for your input. I will share it with my health care team & hopefully find out what if anything needs to be our next step. Hope all is well with you & yours !

markwithwildattr | @markwithwildattr | Apr 26 10:32pm

In reply to @phillipdobrien "Thank you for your input. I will share it with my health care team & hopefully..." + (show)

I am currently taking Attruby (acoramadis,712 mg a day for life) which was approved for ATTR in November of 2024, It has a higher success rate than Trafamidis which was the previous drug to treat the disease. I am also in the process of entering a clinical trial (Crispr Cas 9) which is a one time infusion to stop the production of the misfolded proteins created in the liver. If this is successful, it will be a revolutionary treatment for the disease.

phillipdobrien | @phillipdobrien | Apr 27 8:05am

In reply to @markwithwildattr "I am currently taking Attruby (acoramadis,712 mg a day for life) which was approved for ATTR..." + (show)

Thank you again. I really do appreciate your help. If I have ATTR, I hope to catch it as early as possible & your input is really important. Take Care & good luck !

chrissteyn51 | @chrissteyn51 | 1 day ago

Good day to you. I have the same diagnosis. Live in South Africa and medication for ATTR is not available through your medical aid and is being diagnosis not long ago.

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