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I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
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calf and hamstring muscles severe pain when standing or trying to walk
thanks for your comments Judi how are you doin? What kind of amyloidosis do you have do you take Vydamax? Do you have any skin issues from amyloidosis.Is the medicine called Requip?RX did you get it… read more
My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?
I had a stroke in Cerebellum that I thought was cause of balance issues ( don’t know when), but I think it may be related. Had gotten worse lately. I have CM ATTR so it may have triggered the stroke.
I have be taking Tafamidis since March 2022 with no positive changes. I was thinking that due to my advanced heart failure I may not see any benefit by continuing to take Tafamidis.
You should stay on meds. It helped my brother a lot. He got a heart transplant las November after thanksgiving and he is doing so good now. I hope I get a prescription soon.
I think the only way to really understand how much Tafamidis works is by comparing the heath thickness before and after, at least 1 year of therapy. Has anyone got this information?
Sheldon, is the Acoramidis also manufactured by the same company as Tafamidis and Patisiran?
Palliative Care has been wonderful, they manage all his pain meds. The team is so caring, empathic and I couldn’t imagine managing this path without them.
I have an iPhone - I will check it out
I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.
Call you cardiologist and get him to help you with the application for meds.
