User Reviews for Hizentra to treat Primary Immunodeficiency Syndrome
Hizentra has an average rating of 6.2 out of 10 from a total of 25 reviews for the treatment of Primary Immunodeficiency Syndrome. 52% of reviewers reported a positive experience, while 32% reported a negative experience.
Reviews for Hizentra
"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 heart burn. 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!"
"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."
"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 disappears after a few hours. Once a week at home and after 2 years With no infections it has been great."
"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!"
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"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,"
"My RA med stripped my Immune System. I was getting sick every mth. My antibody levels were literally going down in sequence over time (5,4,3,2,1..). Then after 3 months on Hizentria (20%,10mg,50cc, once weekly), the jump in all of my numbers's 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 Asst, even some coverage Help if Insurance is Lost!, etc!"
"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 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 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. ONLY regret is that I could have had it sooner. I am so thankful for this medication."
"I have only been on Hizentra 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."
"I started on Hizentra 3 months ago and I am quite pleased with the differance it has made. I was always feeling run down and so so tired all the time and I would have one Sinus infection after an other. 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 2 back, lately however I have been noticing a more level and steady state. I don't care to much for inserting the 4 needles every week and the injection site pain but it is only there for a couple of days then I have 5 days to enjoy life. Good luck to you! Mike"
"Plus: It is easy to use, takes less than an hour 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."
"3 years at home has been a relief for me. Needle area sites takes about 2 hours to disappear. 10 grams per week of Hizentra keeps my level normal and I have not had any infections or illness. The cream is applied 15 minutes before the needles and very smooth going in."
"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 have 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."
"I would not recommend this drug Hizentra for Primary Immunodeficiency Syndrome. On the first injection, my stomach swelled up 2 pants sized. I have been on it for over a month and have gained over 20 lbs. I’m in constant pain and always tired."
"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!"
"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."
"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 guard 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."
"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 out weigh any advantage of the 20% solution."
"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."
"(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. 20ml in ave 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 check list."
"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."
"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"
"Immune system is where it should be for the first time in 5 yrs! Actually had to reduce Hizentra by 20% after 6 month blood check!"
"Once you find a good site it is relatively painless. Almost no severe reactions yet. I can't handle IVIG very well so this is it for me."
"Thankful for Hizentra!!"
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"Hizentra has been life changing for me. I’ve been doing home infusion for 9 yrs. I am very seldom sick now. Before Hizentra I was sick more than not. 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."