Hizentra for Primary Immunodeficiency Syndrome User Reviews

• TWa...
• Taken for 5 to 10 years
• April 15, 2020

"Hizentra has been life-changing for me. I’ve been doing home infusion for 9 years. I am very seldom sick now. Before Hizentra, I was sick more than not. I suffered with MRSA, sinus infections, strep infections, along with whatever viruses were going around. Now I am well more than sick. So thankful for Hizentra."

• Aug...
• Taken for less than 1 month
• March 30, 2018

"I just had my third subcutaneous infusion of Hizentra. I have had a few side effects, such as itching at injection sites only on the first infusion. Today, I had a small headache and heartburn. I was easily able to treat this with OTC meds. But the good news is I am able to do things I love for the first time in 15 years. Don’t wait to get this med started. I hope you will be a success story too!"

• Ali...
• Taken for 1 to 6 months
• October 19, 2018

"I infused Hizentra for 3 months, and although I had no infections during that time, my doctor took me off due to adverse side effects. I had flu-like symptoms such as severe fatigue and muscle and joint pain, and felt horrible every day. Eventually, I also had extreme kidney pain after every infusion. There are different stabilizers in each drug, and I was told I was probably allergic to the stabilizer in Hizentra. I switched to Cuvitru, which has a different stabilizer, and I am doing much better, with no pre-meds and minimal side effects. My IG levels are also higher on Cuvitru."

• Can...
• Taken for 2 to 5 years
• November 22, 2020

"I am 62, have been on Hizentra infusions for 2 years, and do the infusions in my stomach. Over the last year, my stomach has gotten really puffy and bloated. I called the Hizentra pharmacy, and they told me that was a side effect to change infusion sites. I will do that and let you know what happens."

• Bod...
• Taken for 2 to 5 years
• July 2, 2013

"I take Hizentra once per week, and I have not had any infections, sickness, or any other problems. The prep is very easy, and afterwards, just a few lumps that slowly disappear after a few hours. Once a week at home, and after 2 years with no infections, it has been great."

• ann...
• Taken for 1 to 2 years
• April 8, 2018

"I have been on Hizentra for over a year. I had a few side effects the first few infusions. I am glad to report that for the first time in my 62 years, I was not sick at all since I started the infusions. It has been life-changing for me!"

• dan...
• November 15, 2013

"I have only been on Hizentra for one month, so imagine it has not had time to work. Within that month, I have had 2 sinus infections (dealing with one now and feel awful). I would like to know how long it took for people to start feeling better. One doc says 5 infusions, and another says much longer. However, I have had more energy in between the infections. Your comments have been helpful."

• Bug...
• October 21, 2015

"I have had 6 treatments. My goal is not to have bronchitis, sinusitis, or pneumonia repeatedly. For 48-72 hours post-rx, my abdomen is hot pink, swollen, and painful. I then feel fantastic for 6 days, and then my malaise gradually kicks back in. I had a 3-month 'virus' at age 11. I was unable to walk for more than a few feet at a time. I have never felt good since. Life was not what it should have been. My 'awesome' days are well worth all the downsides of this rx. The only regret is that I could have had it sooner. I am so thankful for this medication."

• Rjs...
• March 7, 2011

"I started on Hizentra 3 months ago, and I am quite pleased with the difference it has made. I was always feeling run down and so, so tired all the time, and I would have one sinus infection after another. I was so sick of taking antibiotics. They say at about four months I will be close to my plateau, I don't know about that as I was quite run down. Each week has had its ups and downs. You know I step forward and two back. Lately, however, I have been noticing a more level and steady state. I don't care too much for inserting the four needles every week and the injection site pain, but it is only there for a couple of days, then I have five days to enjoy life. Good luck to you! Mike"

• Blb...
• Taken for 1 to 6 months
• February 22, 2016

"My RA med stripped my immune system. I was getting sick every month. My antibody levels were literally going down in sequence over time (5, 4, 3, 2, 1...). Then after 3 months on Hizentra (20%, 10 mg, 50 cc, once weekly), the jump in all of my numbers was AMAZING! Ex: neg/0 up to 7/8!, etc. I'm NOT getting sick every month! Bonus, they have the BEST patient support programs I've ever seen! From P2P support, monthly copay assistance, even some coverage help if insurance is lost!, etc!"

• Bel...
• Taken for 1 to 6 months
• March 10, 2018

"Plus: It is easy to use, takes less than an hour from start to finish, and I have no infusion reactions. Minus: I have been sick 3 times with upper respiratory infections in the last 6 months. While on Gammagard, I had no infections for 3 years, even after traveling. Unfortunately, the infusion reactions to Gammagard were tough."

• Anonymous
• Taken for 1 to 6 months
• September 3, 2020

"I would not recommend this drug Hizentra for Primary Immunodeficiency Syndrome. On the first injection, my stomach swelled up two pant sizes. I have been on it for over a month and have gained over 20 lbs. I’m in constant pain and always tired."

• 191...
• October 31, 2013

"The 20% solution has allowed me to drop 10 grams per week off my infusion. The consistency of my levels for the past 3 years has been normal, and I have not had any infections. Recently, I had to change my insurance, and during that time, I had a lapse in my infusion for 3 weeks. Then, I started back on my infusions, and I did not have any problems at all during the 3 weeks without Hizentra."

• Clo...
• Taken for 6 months to 1 year
• August 11, 2017

"I was on Hizentra and never felt well - ever! During infusion, I would immediately become nauseated. Shortly thereafter, I would experience a horrible headache. My pre-medications were Zofran, Zomig (for my migraine problems), Tylenol, and Benadryl. My trough level was at a decent level, so I was able to have my sinus surgery. I had post-sinus infections of 3 different bacteria. I just kept getting sicker and sicker. Hizentra was the worst drug interactions ever put into my body for 8 months!"

• Chu...
• July 20, 2013

"Three years at home has been a relief for me. Needle area sites take about 2 hours to disappear. Ten grams per week of Hizentra keep my level normal, and I have not had any infections or illness. The cream is applied 15 minutes before the needles and is very smooth going in."

• Ann...
• Taken for 10 years or more
• January 31, 2025

"I was diagnosed with CVID 30 years ago. IVIG infusions had so many side effects for me. Switching to SCIG (Hizentra) 15 years ago was life-changing. I infuse 12 grams (three sites) weekly, and the only side effect is mild swelling that lasts a few hours. I highly recommend researching infusion pumps. The Freedom 60 pump is ancient, and I feel it shouldn’t even still be on the market! The Crono50 pump is amazing! I can’t stress enough to others to research ALL the different kinds of infusion pumps! Hizentra is well worth a try for anyone considering switching to SCIG."

• Sof...
• Taken for 1 to 2 years
• March 5, 2022

"(I am a 76-year-old female in Australia) 2 years 3 months of great IgG trough levels. Infusions initially weekly, but I shifted to twice weekly as it meant cupboard to cupboard time is just on an hour and much more convenient. Two needles, and I alternate thighs/belly with swelling down in 24 hours. 20 ml in avg 35 mins. No obvious side effects. Don't forget there is a fair area of both locations, so alternate sites and remember where you did it last time and shift a bit. 3 times I struck a nerve and knew it, and once a blood vessel on drawback check. Also possible to use four needles to reduce local volume. Sounds as if I am lucky and yesterday I discovered Hizentra will no longer be imported into Australia. Incidentally, I have had NO at-home clinical support to see I have not built in any bad practices, and my doctors only look to the trough levels. Use a checklist."

• Nev...
• Taken for 1 to 6 months
• February 29, 2016

"Switched from nurse-infused IVIG to Hizentra, with zero side effects on the former. Now, 2 months later, sinusitis and nasal misery move in at 5th day, maybe my dose is too low. These old symptoms disappear a day or so after weekly self-infusion. Otherwise, all is well."

• gab...
• Taken for 1 to 6 months
• June 3, 2023

"I've had Hizentra on and off for 4 months. Every time I start the treatment with only 2 grams, when I got to 4 grams, the symptoms were terrible: nausea, lack of appetite, high blood pressure, debilitating headaches, etc. The worst part was being told by my doctor that these symptoms could not happen with Hizentra and now reading all your reviews! Thank you for sharing!"

• 2ol...
• Taken for 10 years or more
• May 9, 2022

"Daughter now 16 has been having weekly subcutaneous infusions since she was 5 years old. She has 40g a week in her thighs, not able to use stomach as she has a colostomy. This drug has been a life changer, thank you, everyone."

• Rum...
• Taken for 1 to 6 months
• September 28, 2020

"I just had my second Hizentra treatment of 6 injections, but this time in my arm. It has been about 8 hours since my treatment ended, and I have been in bed pretty much since then. My arm at the injection sites is hot and swollen, which I can deal with. I did better on gamma globulin despite having lousy veins. My sinus and ear infection symptoms returned mid-treatment. Not sure I will continue since I am feeling ill and vaguely drugged. I just had a kitchen accident and yelled at my hungry cats for jumping around."

• 998...
• December 27, 2010

"Medicare required patients to switch from Viva to globulin. The switch for me resulted in instant disability, numerous infections. It became evident that the same dosage of Viva was not equivalent to Hizentra. Hizentra had to be increased by a factor of 1.59 of Viva. The weekly grams infused outweigh any advantage of the 20% solution."

• Sed...
• Taken for 1 to 6 months
• October 29, 2021

"I use the subcutaneous, 12 grams, once-a-week dosage at home. It seemed to help the first two weeks, but now I am back to the same round of taking antibiotics and getting the sinus problems back a day after stopping the antibiotic. I would like to know why it didn't work. I am tired of living on antibiotics."

• Dee...
• Taken for less than 1 month
• June 8, 2020

"Horrible drug. Hizentra caused a severe site reaction, ended up in the ER. Severe blood pressure elevation to 180, normal is 120. Still elevated at 140 a week later. May have caused kidney damage. Going back to Gammaguard... way better! No reaction over 3 years."

• BPR...
• Taken for 6 months to 1 year
• January 5, 2013

"The immune system is where it should be for the first time in 5 years! Actually had to reduce Hizentra by 20% after a 6-month blood check!"