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September 14, 2024
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Answer Summary

Members discussed whether side effects from Vyndaqel improve over time, with the conversation shifting to clarify that Tafadamis stabilizes... Read more

Members discussed whether side effects from Vyndaqel improve over time, with the conversation shifting to clarify that Tafadamis stabilizes newly produced protein but does not eliminate existing amyloid deposits or reverse organ damage already caused by the disease. Several members shared that their symptom improvements came from a combination of treatments including pacemakers, other medications like gabapentin and torsemide, and interventions beyond Tafadamis alone, emphasizing the importance of realistic expectations and working closely with specialists. A recurring theme was the power of faith, positive attitude, and placing trust in a higher power as essential tools for coping with the physical and emotional challenges of living with amyloidosis.

A MyAmyloidosisTeam Member

Dorothy, do you mean Tafadamis side effects or do you mean symptoms of your amyloidosis? Tafadamis doesn't eliminate any symptoms of amyloidosis.

It merely stabilizes some of your newly liver produced Transthyretin. It does not do anything else. Those who mistakenly attribute their improved clinical status to Vyndamax or Vyndaquel are not thinking about the other drugs they are taking. They aren't thinking about newly implanted pacemakers or ablations they've had.

It is those interventional treatments that reduce some suffering, Tafadamis doesn't change any of your already deposited amyloid fibrills in any of your internal organs or the amyloids resting on your nerves, muscles, tendons and other connective tissues.

September 14, 2024
A MyAmyloidosisTeam Member

Beverly, many individuals I incorrectly believe that one specific treatment will cure all of their medical issues. Sometimes a few symptoms may be alleviated as a result of a treatment but to expect any specific drug or therapy to eliminate all, or even many symptoms of amyloidosis, is simply wishful thinking and may be unrealistic.

Amyloidosis is a multi-organ disease that negatively impacts many patients in similar ways but not always in the same way for each of us. We may all have quite different causation factors for the DNA-protein replication errors that have resulted in our different types of amyloidosis and the consequent differentiation in our symptoms.

I was diagnosed late in my disease progression so for example, Tafadamis has not in my opinion helped me as much as it could have had I been diagnosed earlier on. But, I do believe that my Onpattro treatment has made some significant difference in slowing down my cardiac symptoms. My CRT-D cannot be overlooked as a source of great positive balancing of my heart function. To attempt to falsely attribute one's improvement to any one factor in the management of one's amyloidosis disease
is quite pointless.

We are all medically and.chronologically different in terms of how we have lived and aged. We all have different histories.

Let us all pray for deliverance from our terrible suffering.

September 15, 2024
A MyAmyloidosisTeam Member

Sheldon Thank you .as you say y specialist is in London my own Dr's can't help me.But this forum helps. Regards Dx😄

September 14, 2024
A MyAmyloidosisTeam Member

You should speak to your Amyloidosis specialist if you can access a specialist.

September 14, 2024
A MyAmyloidosisTeam Member

Thank you Sheldon but I have not had anything apart for new tabs.Dx

September 14, 2024

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