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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.

Side effects of daratumumab

A MyAmyloidosisTeam Member asked a question 💭
St George, UT

I have had AL Amyloidosis for at least 18 months. I have been on Chemo appx the same amount of time. I have been in remission for about 6 mo. During that time, I get one treatment per month which consists of just daratumumab. My protein in urine has gone from 10,000 to 2,300. I still get tired everyday. Usually it hits me two or three times a day when I just have to lay down for a while. Somedays, I am exhusted all day and get almost nothing accomplished. Can this be from the daratumuab… read more

October 26, 2025
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MyAmyloidosisTeam

Are fatigue, leg pain, and brain fog related to daratumumab or AL amyloidosis?

It's great that you're in remission and your protein levels have improved! However, the symptoms you're experiencing—fatigue, leg pain, weakness, and brain fog—are more likely related to AL amyloidosis itself rather than daratumumab specifically.

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Are fatigue, leg pain, and brain fog related to daratumumab or AL amyloidosis?

It's great that you're in remission and your protein levels have improved! However, the symptoms you're experiencing—fatigue, leg pain, weakness, and brain fog—are more likely related to AL amyloidosis itself rather than daratumumab specifically.

Fatigue is a very common symptom of AL amyloidosis. It can happen because:
* Your heart may have trouble getting enough oxygen to your tissues if cardiac amyloidosis has developed
* Kidney damage can cause toxins to build up, making you feel weak and tired
* Anemia (low iron levels) is common with AL amyloidosis and can cause exhaustion

Leg and ankle pain and weakness could be signs of:
* Peripheral neuropathy (nerve damage in the limbs), which causes numbness, pain, tingling, or weakness
* Swelling from kidney involvement, which commonly affects the feet and ankles
* Nerve damage that affects the legs

Brain fog can occur when AL amyloidosis affects the nervous system, causing confusion, memory problems, and difficulty concentrating.

Many MyAmyloidosisTeam members continue to experience nerve-related symptoms even after successful treatment. Since your symptoms don't seem to fluctuate with your treatment schedule, it's more likely they're related to organ or nerve involvement from the amyloidosis itself.

It's important to discuss all these symptoms with your doctor. They can evaluate whether your heart, kidneys, or nervous system need additional monitoring or treatment.

October 26, 2025

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