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In a recent MyAmyloidosisTeam poll, about 70 percent of 276 respondents said they’re continuing their current treatment. That may suggest that some people feel their current treatment plan is helping, while others may still be early in treatment and waiting to see how well it works.
There are several types of amyloidosis and many treatment options. Treatment plans can look very different from person to person, depending on the type of amyloidosis, which organs are affected, and how severe the symptoms are.
Because amyloidosis can be hard to treat, that may help explain why nearly 14 percent of respondents said they have not started treatment yet. Some people may still be going through testing to confirm whether they have amyloidosis and, if so, what type.
Others may be newly diagnosed and working with their specialist to choose a treatment plan. In some cases, treatment may be delayed while doctors check which organs are affected and look at a person’s overall health.
As the poll suggests, sometimes people make changes to their treatment plan. About 9 percent of respondents said they’re starting or switching treatments, and another 6 percent said they are not on treatment right now or are taking a break.
There are many reasons someone might switch treatments, stop treatment for a while, or take a break. A treatment may not be working well enough. Side effects may be hard to manage. Amyloidosis may affect the heart, kidneys, or other organs in ways that change a person’s treatment needs. A doctor may recommend a different approach based on the type of amyloidosis a person has.
Amyloidosis treatment plans can vary based on the type of amyloidosis, symptoms, side effects, and how well a treatment is working. Treatment decisions are personal, so it’s important to talk with your doctor about the approach that fits your diagnosis and needs.
It’s also important to tell your care team about any side effects or concerns about how well your treatment plan is meeting your goals.
On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.
Where are you on your amyloidosis treatment journey? Let others know in the comments below.
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