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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.

Did Anyone Else Ever Feel That During Treatment That It Wasn’t Working Or Doing What It Was Supposed To Do?

A MyAmyloidosisTeam Member asked a question 💭
Turlock, CA
September 6
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A MyAmyloidosisTeam Member

Andre, you are certainly not alone, my friend. And like Theresa, I've often turned to my faith to deal with those feelings of helplessness. I sometimes feel like I'm not getting the whole story or I'm only getting the level of care "I can pay for." In other words, rich people don't have concerns like this. Then I go to God and He never fails me. He always has the right answers. I can't stop the fatalistic thoughts from coming into my head. I can stay aware of the fact that negativity will come and go but I don't have to fear it -- ever. I stay as strong as I can and when I can't -- I come here and reach out to my friends. These friends know what I'm going through because they are going through it too. While they may not have the same issues they know and have the same disease. And I'm thankful. I've come to rely on this group a lot during the past few years!

September 7
A MyAmyloidosisTeam Member

It's common for people to have concerns about the effectiveness of their treatment. For instance, in the context of hATTR amyloidosis treatments, some individuals may experience side effects or not see immediate improvements, which can lead to doubts about the treatment's efficacy.

Here are some points to consider
- Side Show Full Answer

It's common for people to have concerns about the effectiveness of their treatment. For instance, in the context of hATTR amyloidosis treatments, some individuals may experience side effects or not see immediate improvements, which can lead to doubts about the treatment's efficacy.

Here are some points to consider:
- Side Effects: Treatments like vutrisiran can cause side effects such as diarrhea, peripheral edema, dizziness, and joint pain. These might make it seem like the treatment isn't working.
- Long-Term Data: Some treatments, like vutrisiran, are relatively new, and long-term data on their effectiveness is still being gathered. For example, the Helios-B clinical trial is set to last seven years to provide more information on the long-term safety and efficacy.
- Comparative Studies: Studies comparing treatments, such as the one involving tafamidis, show that long-term use can lead to better outcomes. Participants who took tafamidis for the entire study had better neurological function and quality-of-life scores compared to those who started with a placebo.

If you have concerns about your treatment, it's important to discuss them with your healthcare provider to weigh the risks and benefits and consider alternative options if necessary.

September 6
A MyAmyloidosisTeam Member

Thank you Theresa!
Everything, as far as the biopsy went well, but went into pretty severe A-Fib. I am doing ok now, just tired. Waiting for results.🙏🏻❤️

September 15
A MyAmyloidosisTeam Member

Mary please let us know how it goes tomorrow

September 9
A MyAmyloidosisTeam Member

Thank you!

September 9

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