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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.
August 21, 2025
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Answer Summary

Members urged immediate medical attention for a black toe, emphasizing that discoloration signals a serious circulation problem that cannot... Read more

Members urged immediate medical attention for a black toe, emphasizing that discoloration signals a serious circulation problem that cannot wait for a routine appointment, with several recommending the ER or urgent care. Many community members shared practical strategies for accessing Vyndamax, including having the prescribing physician persistently advocate with insurance companies, applying for patient assistance programs directly through Pfizer, and ensuring all doctors are coordinating care and fully understand amyloidosis. A recurring theme was the importance of specialist care over primary care for this complex disease, with members stressing that pain management, physical therapy, and aggressive insurance advocacy are critical tools for managing symptoms and accessing life-saving medications.

A MyAmyloidosisTeam Member

A black toe needs to be looked at immediately.

August 21, 2025
MyAmyloidosisTeam

This sounds like a serious situation that requires immediate medical attention. A black toe could indicate reduced blood flow, which combined with your amyloidosis neuropathy symptoms needs urgent evaluation. Your primary care doctor can help manage your pain, but they may need to refer you to specialists given the severity Show Full Answer

This sounds like a serious situation that requires immediate medical attention. A black toe could indicate reduced blood flow, which combined with your amyloidosis neuropathy symptoms needs urgent evaluation. Your primary care doctor can help manage your pain, but they may need to refer you to specialists given the severity of your symptoms.

The nerve pain you're experiencing is likely due to amyloid proteins affecting your nerves. This can cause various types of pain from sharp and stabbing to dull and aching, and is often worse at night. While waiting for your appointment, consider these safety measures:
• Use handrails when available
• Remove tripping hazards at home
• Take extra care when walking
• Document your pain levels and symptoms to share with your doctor

Your doctor may need to adjust your current treatment regimen or add additional treatment options to better manage your symptoms. Be sure to describe all your symptoms in detail during your appointment.

August 21, 2025
A MyAmyloidosisTeam Member

Is the main doctor dealing with the amyloidosis aware of the toe problem? Most of your care should be coordinated. I've asked other doctors if they're familiar with amyloidosis, some are only familiar with the name, but that's it. Make sure your primary is fully aware. I told mine he should research it, he left the practice. Good luck, get the toe looked at.

September 6, 2025
A MyAmyloidosisTeam Member

You might want to go to the ER

August 23, 2025
A MyAmyloidosisTeam Member

Hi Shirley, sorry to hear about the pain you are experiencing, you need to see a specialist, don't wait.

August 21, 2025

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