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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyAmyloidosisTeam Member asked a question 💭
Vero Beach, FL
July 2, 2025
 · 
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A MyAmyloidosisTeam Member

I experienced this when going through chemo and for some time after, a few years. Its not so bad now, or I just got used to it.

July 4, 2025
A MyAmyloidosisTeam Member

All the time. It has gotten better with treatment

July 2, 2025
A MyAmyloidosisTeam Member

I've had dry mouth problems ever since I started taking ATTR medication. Don't know whether it is the meds or ATTR. I agree with Milan about things get crazier and crazier. It is either one joint or another but sure beats not being able to do anything. Have a good day.

July 2, 2025
A MyAmyloidosisTeam Member

As I continue to read these comments the symptoms get crazier and crazier. I don't know if the symptoms come with cardiac amyloidosis or any kind of amyloidosis?

July 2, 2025
MyAmyloidosisTeam

Yes, these symptoms can occur with amyloidosis, particularly when it affects the mouth and tongue. Many MyAmyloidosisTeam members have reported similar experiences. These symptoms often accompany macroglossia (enlarged tongue) which can affect how food tastes and cause oral discomfort. To help manage these symptoms Show Full Answer

Yes, these symptoms can occur with amyloidosis, particularly when it affects the mouth and tongue. Many MyAmyloidosisTeam members have reported similar experiences. These symptoms often accompany macroglossia (enlarged tongue) which can affect how food tastes and cause oral discomfort. To help manage these symptoms, consider working with:
- A registered dietitian who can help adjust food textures and choices
- A dentist who can recommend special mouth rinses or artificial saliva products
- Your healthcare provider to discuss treatment options that may help reduce tongue-related symptoms

It's important to address these issues early as they can impact nutrition and quality of life.

July 2, 2025

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