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Real members of MyMyelomaTeam 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.

Has anyone had this reaction on Darcelex. Right now I need to get an Endoscopy again to rule out the Amyloid and a second bone marrow biopsy to see if I have gone to full MM. My wbc count went down very low but now is up to 2.3. My scalp is very itchy but not red.

3 days ago
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A MyMyelomaTeam Member

Mary, I am very sorry this happened to you. I've been on Darzalex since October of 2017. I do get diarrhea for a day afterwards TMI, but nothing like you describe. I also have a low white count. But it's borderline, usually not low enough to hold my treatment. I also take Pomalyst which I blame as the culprit for my low wbc's.. It's probably both! I also get the horrible, crawly itchy scalp. I have to wash my hair every night after I take my Pomalyst. I hope they find out the cause of your low counts. My counts were very low due to my myeloma. Darzalex has actually been a godsend for me.

3 days ago
MyMyelomaTeam

It sounds like there are a few side effects happening at once — that's a lot to deal with, and it's worth breaking each one down.

Low White Blood Cell Count (Neutropenia)

This is a known and serious side effect of Darzalex. Lower white blood cell counts mean a higher risk of infection, so it's really important to:

- Show Full Answer

It sounds like there are a few side effects happening at once — that's a lot to deal with, and it's worth breaking each one down.

Low White Blood Cell Count (Neutropenia)

This is a known and serious side effect of Darzalex. Lower white blood cell counts mean a higher risk of infection, so it's really important to:

- Report any signs of infection to your care team immediately
- Avoid situations where exposure to illness is likely
- Keep up with regular blood work to monitor your counts

Abdominal Issues

Stomach-related side effects like nausea, diarrhea, constipation, and abdominal pain are commonly reported with Darzalex. Let your care team know which specific symptoms are occurring — they may be able to adjust your treatment or suggest ways to manage them.

Itchy Scalp

While not always listed as a top side effect, skin-related reactions including rash and itching can occur, and infusion-related reactions can sometimes involve skin symptoms. An itchy scalp could be worth mentioning to your doctor, especially if it started around the time of an infusion.

The most important takeaway here is to flag all three of these with your care team as soon as possible. A MyMyelomaTeam member shared this advice: *"Be sure you let your oncologist or myeloma specialist know about these symptoms you are having."* Your team may adjust doses or offer supportive care to help manage what you're experiencing.

3 days ago

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