Severe reaction to Hizentra

[caretaker18]

I'm the caretaker of a women who recently was diagnosed with PI and has started using Hizentra once a week. She has a serious rash on her abdomen where she injects the med and spends most of the next two days in bed with little energy. Do other people have that reaction? Is there something you've done to change it?

Any experiences or advice would be appreciated. Thanks. Caretaker 18

[glowing]

Hi and welcome.
I'm not on Hizentra, but I do subcut weekly. I would suggest checking with the immunologist in case they decide to try another type. I'm on Subgam.

Glo

[jenny]

I was on weekly subcutaneous of Hizentra for two years before I started to develop a continuous cough and hives. At first My consultant said Hizentra was not to blame but after having a serious breathing problem after an infusion I knew it was related. I refused to use Hizentra and I was put back on intravenous infusion which I did for a couple of months. I am now back to doing subcutaneous using gammonorm but have recently started to get hives again. My advise is listening to your body. Not everything with our condition is in the text books. We are all unique.

[tfg3]

Hizentra was a horrible medication for me. After taking viva globin off the market I was put on hizentra. I was perfectly well on viva globin.
With hizentra I hadbresk through infections needing other treatments. Then I became dizzy, nauseous and off balance. I ended up in the ER being worked up for a cerebral bleed after failing all the rudimentary neuro tests. It was decided that hizentra was building up in my body but also ineffective to keep away infections. For me it is poison! Others I am sure a miracle.
I have been extremely well on gammagard liquid since. My quality of life is excellent. Perhaps finding to correct medicine is a craps shoot. Please trust your body and intuition about the medication you are on.
Be well
Teresa

[kane18]

I am currently on hizentra - subcut on a weekly basis for my CVID and I must admit I've not ever had a bad reaction using it (unless I've infused when I've had an underlying cold or infection) I find it works for me. I agree with the earlier comments - it's not for everyone and we are all different and it may take a wee while finding the right one for you

[margaretbear]

I started hizentra sub cu 18 months ago, and spent 15 months feeling too fatigued to move around, light headed and so brain impaired I was afraid of dementia. After a crisis and hospitalization - which tested every part of me and found nothing - I finally made a connection and stopped the hizentra. After about 10 days I was me again, full of energy and brain back on board. It has taken two months to get my doctor on board and clear all the insurance and scheduling hurdles. I will start gammagard subq tomorrow. I had done gammagard IV for over a year with no ill effects, not even allergies.

I was diagnosed CVID at the age of 82, and after almost 3 years on IG therapy have not had a single lung infection. I bless my pulmonary physician for the insight to test for this. Most of my autoimmune garbage has cleared up, but it is still destroying my white blood cells. I would appreciate knowing what others have experienced, and your thoughts on hizentra. We get started on that because it is a higher concentration/shorter infusion time. Maybe fast isn't the best way to go.