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Must I find out the type of Amyloidosis I have?

A MyAmyloidosisTeam Member asked a question 💭
Barstow, CA

I have ATTRcm Tests have ruled out AL and Herditary types. I have RA and I’m 82 and in Vyndamax. I suffer from horrible hip pain which an MRI has found tendinitis in that hip. I’ve had carpal tunnel surgery on both wrists. Is it important to know if I have AA or Wild? Some clinical trials ask for that info. I would be willing to do a trial to help for future victims.

April 11
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Is it important to know if you have AA or wild-type ATTR amyloidosis?

Based on your situation, it sounds like you likely have wild-type ATTR amyloidosis. Since tests ruled out hereditary ATTR and AL amyloidosis, and you're 82 with ATTR-CM, carpal tunnel history, and are on Vyndamax, this fits the wild-type pattern Show Full Answer

Is it important to know if you have AA or wild-type ATTR amyloidosis?

Based on your situation, it sounds like you likely have wild-type ATTR amyloidosis. Since tests ruled out hereditary ATTR and AL amyloidosis, and you're 82 with ATTR-CM, carpal tunnel history, and are on Vyndamax, this fits the wild-type pattern. Wild-type typically affects older adults (usually over 60) and commonly causes heart issues along with carpal tunnel syndrome.

AA amyloidosis can occur with rheumatoid arthritis, so it's worth clarifying with your doctor. However, AA typically affects the kidneys more than the heart, and your diagnosis of ATTR-CM suggests the transthyretin protein is involved, not the serum amyloid A protein seen in AA.

Knowing your exact type matters for several reasons:

* Clinical trial eligibility often requires specific amyloidosis types
* Treatment approaches can differ between types
* Understanding your prognosis and disease progression
* Helping your care team monitor the right organs

Since you're interested in clinical trials, confirming whether you have wild-type ATTR or AA amyloidosis would be valuable. Your doctor can use genetic testing and additional lab work to definitively distinguish between these types.

April 11

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