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Anaphylactic reaction with first dose of Darzalex

by jhorner on Fri Nov 30, 2018 10:31 am

Hello,

I was admitted on Wednesday for my first dose of Darzalex after a biological progression while taking Ninlaro (ixazomib) and dexamethasone. I had premedications consisting of 20 mg dex and 40 mg of Benadryl (diphenhydramine).

About 2 hours into the infusion, I had an anaphylactic reaction to the drug. I broke out in hives everywhere, my throat closed up, and I had a painful stomach ache as I recovered. They administered epinephrine and another Benedryl drip and I was fine.

Is this unusual, or something common with Darzalex? The pharmacist at the hospital told me that he had never seen it. Can they be avoided so that I can try Darzalex again?

I was really excited about Darzalex. I tried to get into a clinical trial using it when I was smoldering because it seems to me to be non-toxic, but they used a person's serum free light chain ratio as one of the qualifying criteria, and mine has always been normal.

Thank You
J

jhorner
Name: Magpie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2013
Age at diagnosis: 49

Re: Anaphylactic reaction with first dose of Darzalex

by dianaiad on Fri Nov 30, 2018 11:35 am

I believe it's actually quite common.

It's my understand that about 40% of patients who start on Darzalex have some sort of reaction to it, some of them very serious. My own first reaction was to go into bronchospasm (I have cough variant asthma, and it's about the same sort of reaction you got, actually).

It was treated with Benadryl, extra steroids, and I bring my nebulizer from home now with every infusion, though I didn't have a reaction to my second and third infusion, and probably won't, now.

What they will probably do, though of course everybody is different, is to 'pretreat' you a bit more heavily with the Benadryl and an extra dose of steroids, infuse slowly, and watch you. However, according to everything I've read, the odds are high that you won't have anywhere near the reaction to further infusions that you did to the first one.

It's amazing how fast our bodies can get used to some things.

But yeah, I believe extreme allergic reactions are not at all uncommon. This information is from the "Patient Information" page of the prescribing information (label) for Darzalex:

Infusion reactions. Infusion reactions are common with Darzalex and can be severe or serious. Your healthcare provider may temporarily stop your infusion or completely stop treatment with Darzalex if you have infusion reactions. Get medical help right away if you get any of the following symptoms:

  • shortness of breath or trouble breathing
  • dizziness or lightheadedness (hypotension)
  • cough
  • wheezing
  • throat tightness
  • runny or stuffy nose
  • headache
  • itching
  • nausea
  • vomiting
  • chills
  • fever

I think you can find yourself in there somewhere. ;) I did.

dianaiad
Who do you know with myeloma?: Me
When were you/they diagnosed?: Officially...March 2013
Age at diagnosis: 63

Re: Anaphylactic reaction with first dose of Darzalex

by Mike F on Fri Nov 30, 2018 12:33 pm

My understanding is the same as Diana's. According to the literature, it's pretty common to get a reaction with the first dose of Darzalex. For most people, this becomes much less severe after that first infusion.

Mike F
Name: Mike F
Who do you know with myeloma?: Me
When were you/they diagnosed?: May 18, 2012
Age at diagnosis: 53

Re: Anaphylactic reaction with first dose of Darzalex

by Nanjeanne on Fri Nov 30, 2018 1:09 pm

My husband started Darzalex on November 1. He had a reaction the first treatment of chills, and they stopped the infusion for about 1/2 hour and then proceeded slowly. The first infusion took 11 hours, but no other issues. Next week he had zero reaction. By his fourth infusion, he was doing the 90-minute protocol. Of course, it’s really like 4 hours with premedications, etc, from start to finish. But no issues at all. He started taking Pomalyst also but not until the second week due to delivery.

We are at hospital for his fifth infusion now and got results from his first cycle. His M-spike came down from 1.9 to 1.2 g/dL. His kappa free light chain level came down from 3.2 to 0.20. So we are encouraged by the results. His hemoglobin upon relapse was 8.4 and is now 9.6. So things are going in right direction.

We are dealing with terrible pain from myeloma-related issues around his hip and lower back but start radiation of that area in about a week for 10 sessions. Hoping that helps so he can walk again!

Wishing you good luck with Darzalex and smooth sailing from now on.

Nanjeanne
Name: Nanjeanne
Who do you know with myeloma?: My Husband
When were you/they diagnosed?: April 2014
Age at diagnosis: 66


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