User Reviews for Hizentra subcutaneous

I would love it if they would package it in a daily pod that i could attach/inject and get a daily dose slowly (like an insulin pump) and the only interaction I need is attaching and removing. I have done the weekly schedule, and find the daily injection suits me better, but its pretty fiddly given available solutions.

The side effects have been horrible--headache, nausea, lightheaded, loss of appetite, diarrhea and significant joint pain. Also, the infusion sites (2) have been painful, red , swollen, and bruised. I have stopped using.

I have been infusing 10g/week Hizentra for 2 years now and it has worked wonders. I highly recommend: drinking two quarts electrolyte water day before, day of and day after infusion to minimize side effects. (I use Ultima) I also use Benadryl (1 capsule) as pre treatment to minimize side effects.

I have not been sick. I do subQ weekly of 9 grams. The side effects are terrible. My legs feel like jello, headaches, bottom eye lids are red, I stay hungry, bedrest fatigue still, brain fog. I have been using it for 5 weeks. I am not fond of needles. So it is bothersome for me. I stay swollen for days from the sites and itch at the sites.

Iâ??ve had three doses of Hizentra and found increasing side effects and even had anaphylaxis on third treatment. Before Hizentra I used monthly IVIG of Gammaguard. I pre-doze with Alieve and Benadryl but still have severe back and joint pain, migraine, fever, fatigue and large hot pink site reactions. The site reactions last for days and this time have resulted in hives from arm pit to elbow because I used the back of my arms for site injections. Miserable and after emergency room visit where I had IV of prednisone. Epinephrine, Benadryl and saline, Iâ??ve been told to NEVER take this again. Looks like I will switch back to gammaguard with pre meds. BENEFIT - I havenâ??t had bacertial infections. I have RA and the ends I took reduced my immune system so severely I was sick every 4 to 6 weeks with staphylococcus, sinusitis, ear infections or pneumonia. The immunoglobulin have boosted my immunity and put RA in remission. Just need to use an at home drug that Iâ??m not allergic to. Read More Read Less

I have Systemic Lupus and Hypogammaglobulinemia. Most of my life I have had regular bouts of Bronchitis and occasional Pneumonia. Eleven years ago, I was diagnosed with SLE - shortly after that I was hospitalized more than a dozen times for Pericarditis and Pneumonia. A doctor tested my IgG levels and determined that I needed infusion therapy. I have been self infusing for 10 years and I have rarely been hospitalized since. I do have chronic joint pain, fatigue, migraines and cognitive impairment. Staying out of the hospital far outweighs the side effects of the Hizentra. For the headaches I now receive regular Botox injections - they have provided tremendous relief. Previously I had headaches everyday and usually they lasted more than 6 hours and were quite severe. Hope this helps!Read More Read Less

I have had weekly infusions with Hizentra since May. I have not had any infections, but the side effects have been horrible--headache, nausea, lightheaded, loss of appetite, diarrhea and significant joint pain. Also, the infusion sites (2) have been painful--red, swollen, and bruised. I have stopped using it and my doctor is recommending a different product.

I had to have the slowest infusion rate possible due to nausea vomiting fatigue. And it is not the most comfortable of treatments no matter how long or thin the needle subQ is still subQ. BUT that being said my immune system has responded beautifully to the Hizentra!!! I have NOT been in the hospital for an infection since I started it. Normal oral antibiotics work now. I feel better in general. still taking naps and having iv iron infusions at times but my immune system is much better. normal white cell counts which has happened in over 2 years. Read More Read Less

I had 3 separate chemotherapy regimens since 2010. In 2014, I started IV Ig. End of 2015, I switched to sq - each route was delivered every 2 weeks. The bone pain that was present after infusing for a day or two is now constant at night focusing on pelvic area. Laying down starts the pain and it continues until I'm up walking around for several hours. I can't increase to stronger pain medication because I need my brain to function. After reading some of the feedback, it appears pain is a common side effect. Deciding if switching back to IV would be better. Read More Read Less

Had an IVIG infusion in 2013 with another product and experienced a bad systemic reaction. Had my first, and now only, Hizentra SCIG infusion 11/17/16. While easy to administrer, the side effects were overwhelming for almost two months. Felt like I had a bad case of the flu, so tired, could stay awake, exhausted, severe joint/bone/spine pain. Dr. wants me to try again, said he's never heard of this type of reaction. Seriously, no thank you. Hizentra kit was delivered to hospital where the first infusion was performed. Shame on everyone for they did not give me any advance notice about hydrating, etc. No reaction at hospital, or even at infusion sites, but I was completely incapacitated following. I wasn't sure I could get back. Finally feeling okay. Never againRead More Read Less

I have been satisfied with Hizentra, as it pertains to ease of use and my ability to stay off antibiotics and steroids. However, I am suffering quite a lot with severe joint pain. I was told by both the pharmacist and my Immunologist, that this was not a very common side effect. The pain is often debilitating. I do have arthritis, but my joint and bone pain has gotten SO MUCH WORSE, since I have been on Hizentra (19 months). I began using Cymbalta and still have pain. The Hizentra was recently cut by 1mg. But, that was only 10 days ago. And, as of my typing of this, I have not found a significant reduction in the pain. Has anyone else experienced this?Read More Read Less

I wrote a review on this in 2012 I think. I must say I am not liking the side effects I get from Hizentra. I have CVID. My coughing gets worse for days after I infuse, I am fatigued, lite headed, headaches, just everything hurts. I have these effects until it is time to infuse again. I infuse in 3 sites 50ML (10grams) weekly, but I am thin and am noticing caved in places on my thighs where I infuse. I will say Hizentra prevented my numerous bouts of bronchitis, etc. and due to an insurance change I was without infusions for over 5 weeks and ended up in hospital with severe lung infection and problems, but since re-starting this I have seemed to be sick entire time. I truly don't know what to do!! To any others I too get horrible chest discomfort with this drug and just generally feel sick. I'm going to ask my doctor about switching to something else. I did develop seizure disorder, but I think most are saying that is due to the Lupus I have, but I find it odd it never happened until after being on Hizentra for probably a year at that time. I can't stand the pain it causes....Read More Read Less

Sometimes I get lightheaded and dizzy during infusions and sometimes itch during them at the sites, and my knees seem worse (arthritis) but otherwise it seems fine. And no sinus infection at the moment, or bronchitis! For a month! Wow.

Have been infusing for around 5 years now on a weekly basis. 4 sites, about 2 hours. My health is dramatically improved. Some insurance issues, and worried about my change to Medicare next month. Had to be without Hizentra for about 5 months (insurance) last year and came close to dying. Don't want a lapse in coverage again!

okay, so this medication has brought my levels of Igg up to where needed, ease of use SC at home no issue. 2 problems for me...weight gain from 122-132 in 2 years as well as cervical headache day 3-4 post infusion,...which is a bad headache twice weekly. Seriously weighing out if I might decrease my med intake to keep levels on low end of normal and defer these awful headaches. I hydrate, do tylenol, benadryl...bla bla bla...no matter what i do, even get 2 occipital nerve blocks, i can not get this awful headache gone from right base of neck to behind right ear over side of head to right eye. Quality of life being looked at seriously by this girl. Am wondering...Does this medication cross the blood brain barrier? And, could it be leaking into my spinal column fluid to be causing my dreaded post infusion day 3-4 headaches??? Read More Read Less

Life saving!

I have been self-infusing Hizentra every 2 weeks for 6 months, and find the procedure quite easy to do now that I have been trained by a nurse. My immune system has improved greatly. However, I usually feel quite "off" for a day or two after treatment(I do take tylenol and allegra before each treatment), and now after reading other patient's comments, I realize the fatigue could be caused by the infusions. I will check with my immunologist. I am very pleased to have my defenses against bacteria greatly improved, but Hizentra does not aid my "T" cells, so I'm still quite vulnerable to viruses. Since I've spent a lot of time before infusions fighting bronchitis and pneumonia, I find myself avoiding social events because I'm so afraid of picking up a virus. Anyone out there with this immune disorder figure out how to be more a part of "life" while avoiding getting viral infections that put you under for 6 months? Read More Read Less

Only been on drug for a month and I wish I had never agreed to it. Started drug after cataract surgery and now have a partially detached retina. Not sure if it caused it, but the fatigue, weight gain, and the cough isn't worth it. I will take my chances with the bugs out there. I am sicker now than before I started it.

I have been using Hizentra for 43 weeks. I infuse sub q once weekly. For the first few weeks, I felt very tired and achy for a couple of days after treatment. I talked with the on-call pharmacist who recommended using a slower flow rate, from 900 to 600; made a tremendous improvement in side effects!! I can't say enough about my treatment plan...it has literally given my life back to me and my family. I haven't been hospitalized this year!! I would like to mention that I have begun to notice the last few weeks that my energy level drops and my fatigue increases a couple of days before time for my next infusion. The pharmacist is consulting with my doctor about infusing twice weekly (same dosage, split into 2 doses) to hopefully remedy the problem. It is regretful that physicians often have difficulty recognizing when a patient who is having certain illnesses for no apparent reason needs to be examined closely for "outside the box" diseases. I have irreversible lung damage but just as scary is the bone necrosis I have developed, most likely a result of steroids prescribed for breathing issues. Makes me very sad.Read More Read Less

My daughter has severe headaches and bleeds from injection sites. Wish there was something that didn't make her feel so bad.