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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Bad body aches with Darzalex (daratumumab)

by Jean Ruth Howard on Sat Nov 17, 2018 2:16 pm

My husband just started Darzalex and he has terrible overall body aches. Is this an unusual side effect of Darzalex? Does it change over time?

Jean Ruth Howard
Name: Jeannie
Who do you know with myeloma?: husband
When were you/they diagnosed?: November 2012
Age at diagnosis: 47

Re: Bad body aches with Darzalex (daratumumab)

by Pepperink on Sat Nov 17, 2018 8:39 pm

Jeannie,

I have been on Darzalex treatment for over five months. As far as I can tell, the Darzalex itself seems to have no side effects.

However, several other drugs are usually given during the same infusion session.

In particular, the dexamethasone might have given me occasional backaches over the first three days after treatment.

After the first eight weekly infusions, when I went to every other week, I don't remember having any backaches.

Also, last year when I was taking 40 mg of dex orally, my backaches were more severe (although not debilitating).

Pepperink
Name: Jimmie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 16, 2017
Age at diagnosis: 66

Re: Bad body aches with Darzalex (daratumumab)

by Multibilly on Sat Nov 17, 2018 9:33 pm

Hi Jeannie,

Sorry to hear about your husband's aches.

I can't speak from any personal experience, but you might want to read about the more common side effects of Darzalex here:

Side Effects

Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor or nurse immediately if any of the following side effects occur:
More common

- Blurred vision
- BODY ACHES OR PAIN
- chest pain or tightness
- chills
- dizziness
- ear congestion
- fever
- facial swelling
- headache
- loss of voice
- nausea
- nervousness
- pounding in the ears
- slow or fast heartbeat
- sneezing
- sore throat
- stuffy or runny nose
- trouble breathing
- vomiting.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Bad body aches with Darzalex (daratumumab)

by Jean Ruth Howard on Sun Nov 18, 2018 3:15 pm

Thanks so much for your replies Jimmie and Multibilly. We've had such good luck only dealing with minor side effects with his previous protocols during the last 5 years. This one has taken me by surprise. It's rather debilitating.

He's on dex (40 mg), but just came off of a lower dose of Medrol (methylprednisolone) with the last protocol, so I was thinking that the body aches maybe had something to do with steroid withdrawal (which he has been through before but nothing like this).

He's also fighting to get his hemoglobin back up (was at 8.5, then 8.9). They are giving him Procrit (epoetin alfa) shots. Of course, we would love to avoid a transfusion. We are definitely headed in the right direction, so fingers crossed. We see the doctor again in two days.

Jean Ruth Howard
Name: Jeannie
Who do you know with myeloma?: husband
When were you/they diagnosed?: November 2012
Age at diagnosis: 47


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