Immune globulin subcutaneous 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."

• She...
• Taken for 6 months to 1 year
• December 28, 2018

"First put on Hizentra. That worked like a miracle. That is, until my gradual itchiness turned into full hives after one infusion. So that was stopped. Cuvitru was next prescribed. As a nurse friend noted, often it's the 'stabilizer' that people are allergic to. I still have lightly raised hives, but they aren't full on or totally itchy. More like dry skin. Other reactions are redness at the infusion site for about 12 hours... gone the next day. Sometimes exhaustion that literally can knock me out for anything up to 2 hours in the mid-afternoon. Slight feeling in my head of cold and headache. Again, you can prep with Tylenol (I do not) and Benadryl. (I do not, since it does put me to sleep). The medication has kept me healthy. I no longer sweat being around children or adults who are coughing. The weekly infusion does run my life on that day, but the trade-off to be healthy and not sick on antibiotics 4 plus times a year (often with second rounds) makes the trade-off worth my while."

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

"What a savior! After enduring six months on Privigen (low trough level after), switched to Hizentra, more side effects and infections like I was on nothing, except the side effects were unbearable! I'm on my second month of Cuvitru and had no idea that you could feel so well after a subcutaneous immunoglobulin (SCIg) replacement. I have energy, my sinus infection is FINALLY getting better, almost zero side effects. I love Cuvitru, and it has changed my life!"

• 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."

• ACa...
• Taken for 2 to 5 years
• January 26, 2022

"Cuvitru quite literally has given me the majority of my life back. I have been on several IVIG and sub-q IgG treatments, all with reactions (Hizentra, Privigen, Gamunex-C). Until Cuvitru, I have been infusing 80 mL every two weeks for the past 4 years, and my levels have gone from 500 to stable 1100. In 5 years, I have only been sick twice; one of those times was when insurance took me off of Cuvitru to “try something else.” Nope. This is the stuff. I pre-game with 50 mg of Benadryl to be on the safe side and an ice pack, then 40 minutes of me time and a peaceful night’s sleep. Plus, the patient support from Takeda is beyond phenomenal. Zero acute reactions, and only localized swelling/itching at injection sites (which goes away quickly within the hour) if I get lazy with either line prep or needle removal. No lidocaine needed, two easy injection sites. What works for you as a PI patient is what works for you. It might not work for another PI patient. We’re all different!"

• 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."

• Ret...
• April 23, 2018

"I will begin my treatment with Cuvitru this coming Thursday. I’m hoping that my expectations aren’t set too high. I’ve felt sick for so long and exhausted for so long, I don’t want to be let down. Can anyone let me know what realistic expectations I should have? Thank you."

• 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"

• Jan...
• Taken for 5 to 10 years
• January 22, 2022

"I was sick most of my life. Always had asthma, bronchitis, the flu, pneumonia, and severe sinus, ear, and eye infections. All the time until a great doctor finally found out that I had a low immune system. Working at 51%. I lived on antibiotics. Got so bad the only antibiotic that helped is Levaquin, which is a very strong antibiotic that cancer patients take. Now I’m immune to them. I started out with Hizentra for about 4 years, and first it helped some. But I still had my twice-a-month sinus/ear infections. So the doctor switched me to Cuvitru. Been on it for about 4 years. It’s helping, but I still get those horrible sinus infections every month or two. Tonight I was researching the two. I got very scared. I read that Cuvitru can cause bad blood clots in your brain and other places. Now I am scared to continue on it. I am 66 years old and very worried about this. Not sure what to do. My stomach also swells and puffs out badly from the Cuvitru."

• 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!"

• Dom...
• Taken for 6 months to 1 year
• October 11, 2021

"Cuvitru has been a great medicine for my son with Primary Immunodeficiency Syndrome. His IgG levels have gone up from 400 to over 1,000. He isn't sick often. He has no bad side effects, and the convenience of doing it at home has been wonderful as well."

• 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."

• Pip...
• Taken for 2 to 5 years
• July 23, 2022

"I have been infusing Cuvitru subQ weekly in my thighs for more than 4 years, with no pre or post-meds. I started on Hizentra, which gave me many severe side effects, such as flu-like symptoms, probably due to an allergy to the stabilizer L-proline. My immunologist switched me to Cuvitru, which has a different stabilizer, Glycine. The only side effect I get is extreme sleepiness, so I infuse right before bedtime. During the 4 years, I have had two dose increases. My most recent IgG level in June 2022 was 1234, the highest it has ever been. My weekly dose is now up to 16 grams. I love infusing Cuvitru weekly because it is a smaller amount that takes less time, with fewer side effects. Infusing it weekly keeps my IgG levels more balanced out, so I don’t get lower trough levels before the next infusion that can cause severe fatigue for several days. I would recommend Cuvitru to anyone who has PI, especially if you have been on other products that have caused adverse side effects."

• Tam...
• Taken for 6 months to 1 year
• January 17, 2022

"I first posted back in April 2021. It’s been nine months. I subcutaneously infuse 30 mL once a week for IGG deficiency and lung issues. I am very pleased with my outcome. I have more energy, less infections, overall improved health, and stable the day of infusion. I have puffiness at the sites for a couple of days. I have not noticed anything significant as far as a side effect. I hope to continue this way, as I will be on this the rest of my life. Thank you to all who donate.❤️"

• Vol...
• Taken for 2 to 5 years
• April 6, 2022

"For better than 30 years, I tolerated respiratory illnesses, going in and out of doctors' offices to get treated. During one particular bad episode, my doctor sent me to an ENT, finding a serious sinus infection. Medication was prescribed and immediately relieved the symptoms. As quickly as it worked, when completed, the infection returned. I was sent to an allergy clinic, finding no reactions. I ultimately was sent to an immunologist, where it was found I had CVID. Cuvitru was prescribed, and within 2-3 months of self-subcutaneous injections, I began to enjoy life, feeling better than I had in years. Over the past 4 years, I have been free of suffering illnesses of sinus infections, flu, bronchitis, and pneumonia."

• SHE...
• Taken for 1 to 6 months
• January 1, 2020

"First treatment: abdominal cramps, nurse suggested Benadryl. No problem since. I only took them twice! No lumps, bumps, or redness, nothing. Feeling improvement already. Movement already improved. Thank you so much, Cuvitru, this has been 7 years to find a drug that works!"

• 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."