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My husband has Al Amyloidosis

October 30, 2023
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A MyAmyloidosisTeam Member

Some of the meds can cause a raspy voice and this usually disappears once they are able to come off of the treatments.

October 30, 2023
A MyAmyloidosisTeam Member

My voice tended to be affected by the fluid in my lungs--more fluid caused change of voice.. Also, voice always seems better in the morning, and deteriorates as the day develops. I am four months into the monthly routine and away from the weekly chemotherapy drugs. [Oct 30]
This morning [Dec 17] I surprisingly regained my bass voice. I could have done a Larry Hooper (Lawrence Welk) imitation. Perhaps this is related to the recent increase in my diuretics.

October 30, 2023 (edited)
A MyAmyloidosisTeam Member

Good evening, Mary10:
At this point swallowing anything is difficult. I do have the thick tongue symptom as well but the swallowing problem feels like there’s a dam somewhere south of my mouth. Weird.
My amyloidosis team referred me to a EMT specialist who concluded there was nothing that he could treat.
My voice gets strange by midday seemingly due to heavy doses of Torsemide that leaches fluids from my system. Using Torsemide has proven to be a real tightrope as it also leaches Potassium from one’s system. I’m susceptible to Potassium kidney stones.
Best,
Rob

October 31, 2023
A MyAmyloidosisTeam Member

I had issues with my voice which seemed to correlate with fatigue and the medications administered during my initial treatment plan (Darzalex + Cy-Bor-D). My voice would get weak and raspy, especially if I would talk a lot.

October 30, 2023
A MyAmyloidosisTeam Member

I haven't had much problem swallowing. Sometimes I have indigestion. But l have noticed for about 2 weeks my voice sounds like it's changing, like a 12 year old boy. Cracking and stuff. I'm a 70 year old woman. It can be embarrassing.

April 7, 2024

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