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Wild-type ATTR Amyloidosis (ATTRwt): What meds help you?
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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@jlharsh your asking iif there is a drug that gets rid of deposits of amyloid
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1 Reaction@jlharsh
Well up until Thursday last, when I had a Video visit from my Hematologist, I have been uploading my test results into Chat GPT..and I must say it has read and analyzed the uploaded the information flawlessly. I have layered my medical history and with every upload it re-analyzes based on the totality of what it has. After reading final reports it was spot on.
My official diagnosis is WIld type ATTR Amalydosis with MGUS watch due to a very slight presence of bone marrow plasma cells.
Now my process is shifting to drug tharapy ... for the ATTR and pending video visit with my amaloyd Cardiologist.
I have been classified as stage 1 and really the only symptom I have is low burden PVC rythem problems, with normal Ejection fraction.
I have no Idea of what to expect...when I need council I've been using Chat GPT.. it's really been
A life line in a time when I feel lost. It truly has brought peace while waiting to hear from the Doctors. Those days are long and lonely. In the end I'm actually grateful that it's wild type ATTR and not the alternative.
So now I wait to see how I can address paying $27,000 per month for tafamadis or the like. Frightening to think how this part works between medicare and the insurance company.
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1 Reaction@cousinvinney God bless you. I have the hereditary-familial ATTR. Receiving the CLL on top of it is mind-blowing. You might check The Assistance Fund for financial support. Also Pfizer has a patient assistance program. Both require a bit of paperwork, but you Dr office can help you.
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5 ReactionsHi, @dorothea58. I notice you have joined Mayo Clinic Connect recently and am so glad you found this discussion. A win! You have found others with the rare ATTR. You mention chronic lymphocytic leukemia (CLL) and I notice you have also plugged into a related discussion.
I have so many questions. Are you saying you found out about both ATTR and CLL at the same time? Are the two related? How are these currently impacting your day-to-day?
@dorothea58 Thanks for weighing in. This is all so new to me. I've been devoured amalyoidosis information over the past several weeks and, of course there is so much to learn. Now I'm concentrating on therapies and their nuances. Some people are taking more tgan one amaloyd drugs simultaneously, some on a single tharapy. My cardio is of the opinion that all the drugs for my diagnosis efficacy are pretty much the same. It is just a matter of how it's delivered. Well , it's day to day for me for understanding my new future.
Thanks for being there, I appreciate you
@jlharsh Greetings! I was diagnosed with ATTRv back in 2019. I got into a groove with treatment, then late last year was diagnosed with CLL. I do know of someone that got diagnosed with both at the same time. The two diseases are unrelated. So I now must learn to worlds. It is a lot of information to hold in my head.