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Amyloidosis AL

A MyAmyloidosisTeam Member asked a question 💭
St George, UT

I have AD AL for 2 years. Have been on Daratumumab for 1/2 years (took me a year to learn how to say it!). I will be off it in 2 months. I am in remission. Question is about side effects. I still get tired, have numbness and pain in lower legs and ankles. Chemo Brain. Do they get better after stopping the drug. Any lasting side effects? Thank you.

April 7
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MyAmyloidosisTeam

Will your symptoms improve after stopping daratumumab?

It's great to hear you're in remission! The symptoms you're experiencing — fatigue, numbness and pain in your lower legs and ankles, and cognitive issues — are common with AL amyloidosis and its treatments.

Some symptoms may improve after treatment ends, but others Show Full Answer

Will your symptoms improve after stopping daratumumab?

It's great to hear you're in remission! The symptoms you're experiencing — fatigue, numbness and pain in your lower legs and ankles, and cognitive issues — are common with AL amyloidosis and its treatments.

Some symptoms may improve after treatment ends, but others can persist. Here's what to know:

Nerve-related symptoms (numbness, pain, tingling):
These might improve if treated for AL amyloidosis, but many people continue to have nerve-related symptoms even after treatment is finished. Nervous system symptoms can be caused by both the amyloidosis itself and chemotherapy drugs used in treatment.

Treatment-related symptoms:
Symptoms caused specifically by chemotherapy drugs usually disappear once you're no longer using these medications.

Fatigue:
This is a common symptom of AL amyloidosis itself, not just treatment. Some people experience improvement over time, while others may continue to feel tired.

Since everyone's experience is different, it's important to discuss these ongoing symptoms with your doctor. They can help determine whether your symptoms are from the amyloidosis, the treatment, or both — and work with you on managing them going forward.

April 7

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