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 fam...
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 infus...
Concerned mom | 25-34 | Female | On medication for 1 to less than 2 years | Caregiver
7/22/2014
Condition: Common Variable Agammaglobulinemia
Overall rating 1.7
Effectiveness
Ease of Use
Satisfaction
My daughter has severe headaches and bleeds from injection sites. Wish there was something that didn't make her feel so bad.
1
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George Hoyt | 65-74 | Male | On medication for 1 to less than 2 years | Patient
7/17/2014
Condition: Primary Immune Deficiency Disorder
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction
Cancer treatment with Rituxain detroyed my immune system and gave me Erythrocitosis which causes my bones to produce too many red blood cells. I have to have phlebotomies once a month to prevent strokes. But I am a huge fan of Hyzentra. It has given me my life back again. Without it I had pneumonia or brochitus almost all the time. Now that I have taken Hyzentra for 70 weeks I am so grateful for this miracle drug and easy process. I haven't been sick since I started using it!! My only complaint is that it makes me very fatigued with the slightest exercise...but I am persisting.Read More Read Less
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Ladydog1 | 55-64 | Female | On medication for less than 1 month | Patient
7/8/2014
Condition: Primary Immune Deficiency Disorder
Overall rating 1.3
Effectiveness
Ease of Use
Satisfaction
Just wanted to add that I have had bruising also which I didn't realize was related until I saw other reviews. Also, this is only the second time I have used it and have had moderate to severe nausea from day 2-5. Supposed to start again in 2 days. Also have some mild itching at the sites. My doctor thinks larger needles may help with the site reactions but has anybody had nausea this long?
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Ladydog1 | 55-64 | Female | On medication for less than 1 month | Patient
7/6/2014
Condition: Primary Immune Deficiency Disorder
Overall rating 1.3
Effectiveness
Ease of Use
Satisfaction
I was on monthly IV Privigen which I tolerated well except for some fatigue the day after injection. Because of my new insurance, I have to do weekly self infusions of Hizentra. I am in the medical field and have had only 2 injections but find the whole process extremely ridiculous with 4 sites and spaghetti thin catheters. It is also time consuming: set up 50 minutes, infusion 2 hrs. The next 2-3 days had severe reaction to sites, baseball sized redness and edema as well as severe nausea. Even felt like I got a cold the second time with malaise and an earache! I know I have to give it time to see if it reduces my infections but right now, I am ready to quit. Won't even consider traveling with all the necessities!Would love to go back to monthly infusions! And I pray I don't gain wait. 2nd time did have itching in scalp.Read More Read Less
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Weeks1590 | 65-74 | On medication for 6 months to less than 1 year | Patient
7/1/2014
Condition: Primary Immune Deficiency Disorder
Overall rating 3.3
Effectiveness
Ease of Use
Satisfaction
Have begun having head itching and lips tingling no rash has anyone else experienced this side effect also seem to be developing other allergies since switching from gamma gaurd
4
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Air Force | 65-74 | Male | On medication for 1 to 6 months | Patient
5/23/2014
Condition: Primary Immune Deficiency Disorder
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction
Now that I am doing it on my it hasn't been too bad. Had some minor weight gain and some joint pain. I have only been on it for 2 mos. so not sure yet what the results will be.
3
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mashleyu | 25-34 | Female | On medication for 2 to less than 5 years | Patient
4/17/2014
Condition: Primary Immune Deficiency Disorder
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction
I was on Hizentra for several years before switching to IVIG. I started out once weekly at 3 injection sites infusing for 4 hours. This proved to be too much for me (extreme aches and inability to function well at work). I talked to my doctor and we split the infusions to twice weekly at 2 injection sites still infusing each for 4 hours. This worked wonders. I premeditated with tylenol and benadryl to help with the site reaction and eventually was able to cut out the benadryl. When I was consistent with my treatment it lowered my infections significantly and had more energy than ever. Unfortunately the infusions were difficult to maintain. I had to work half days the day after treatments to be able to recover and when I became less and less consistent in doing the treatments my doctor and I decided to go to IVIG once monthly. Downside: time commitment each week interfering with personal/professional life Upside: levels stay more consistent due to lower doses more frequentlyRead More Read Less
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Cindy L | 55-64 | Female | On medication for 1 to less than 2 years | Patient
2/1/2014
Condition: Severe Combined Immunodeficiency Disease
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction
I have a long history of sever, chronic sinus infections, including bone infections (osteomyelitis) and MRSA. Was previously on Gammagard via a port-o-cath, so I appreciate sub-cu Hizentra. Worked fine; no problems with needles, routine etc. But side effects started after about 18 months: from mild redness at needle sites to huge, hard welts, malaise and debilitating joint/muscle pain. Became so serious I had to switch to sub-cu Gammagard.
2
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PatientzLikeUs | 35-44 | Female | On medication for 5 to less than 10 years | Patient
1/10/2014
Condition: Primary Immune Deficiency Disorder
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction
Used to be on Vivaglobin, then was switched to Hizentra the last 4-5 years or so. While I'm happy to not be sick all the time, I really don't like this stuff at all. I find I am very achy (joints, muscles, etc) and very tired all the time. I've learned how to deal with the fatigue, but the pain is something else. And yes, when you have an immune disorder, it opens the door to other immune issues as well. So now I have Fibromyalgia-which is a side effect of Hizentra-of making it "shelf-stable" instead of keeping it in the refrigerator. I've also developed a couple of other issues as well, just great! Maybe I would like this better if my primary doctor would give me something for the pain...Tylenol just doesn't cut it. But I guess it could be worse. I could be back at the ER and on tons of antibiotics like I used to be. May God bless all of us with our immune disorders!Read More Read Less
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obrown | 45-54 | Male | On medication for 2 to less than 5 years | Patient
1/4/2014
Condition: Common Variable Agammaglobulinemia
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction
Worked great for two years as did Vivaglobin before. I have to stop treatment however, because I have been diagnosed with renal damage and my doctors believe that it was caused by infusing hizentra.
1
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Jeanne | 65-74 | Female | On medication for 2 to less than 5 years | Patient
12/2/2013
Condition: Severe Combined Immunodeficiency Disease
Overall rating 2.0
Effectiveness
Ease of Use
Satisfaction
I am 68 years old and have had PID since 1961. I used to take GG IM, and it worked fine and cost $50. With Hizentra I have gained 20 lbs. and have terrible joint pain. I do not find it effective in prevention or quick recover--as I have been on antibiotics for 21 days for a sinus infection! This stuff is a big-pharm con game. Bring back the IM GG!!!!
1
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142edisto | 65-74 | Female | On medication for 1 to 6 months | Patient
11/14/2013
Condition: Common Variable Agammaglobulinemia
Overall rating 1.7
Effectiveness
Ease of Use
Satisfaction
Since beginning this drug I have been diagnosed with collage nous colitis has anyone else had this problem
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jl | 55-64 | Female | On medication for 1 to less than 2 years | Patient
6/21/2013
Condition: Primary Immune Deficiency Disorder
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction
I had local reactions but now take advil and zyrtec beforehand and that helps alot with local swelling and irritation. It has boosted my immunity to colds and such, infuse once a week. Lately am crashing on day six so may want to go more often. Been on it for 1.5 years with few issues. I was checking here cause I just go a diffuse rash over half my body and wondered if from hizentra. Will check with dr.
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hcocchi | 65-74 | Female | On medication for 5 to less than 10 years | Patient
4/24/2013
Condition: Primary Immune Deficiency Disorder
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction
I have been on this medication for approx 5 years. Without it I have spent lots of time in the hospital. Since I have been on this 1 time a week, I have been much better. I have trouble with joint pain but I would rather the pain than the hospital.
5
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sand123 | 7-12 | Male | On medication for 1 to less than 2 years | Caregiver
3/6/2013
Condition: Primary Immune Deficiency Disorder
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction
My son is 11years old and has been on Hizentra for almost 2years. In this time he has been fatigued more than normal.Also his PFT is lower than when he was on his last medication.He bruises with every bump.I have expressed my concern to his physician and she's not as concerned as I am.I'm not sure this is related or not.If anyone out there has experienced these symptoms.I would greatly appreciate the advice.
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Anonymous | 45-54 | Male | On medication for 1 to less than 2 years | Patient
2/24/2013
Condition: Primary Immune Deficiency Disorder
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction
I have been taking his entire for over a year with good results. The only thing I have experienced is weight gain. I keep getting told its not the drug but I disagree. I have gained about 20 pounds in the last year.
5
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AW | 45-54 | Female | On medication for 1 to 6 months | Patient
2/11/2013
Condition: Primary Immune Deficiency Disorder
Overall rating 2.0
Effectiveness
Ease of Use
Satisfaction
I could not tolerate Hizentra for many reasons, primarily the decrease in breathing capacity , the fevers, the headaches and extreme fatigue I had to pre-dose with prednisone & during the infusion, had to take more prednisone & for 2 days afterwards. No wonder that I gained weight that is hard to lose! Also, very strange dreams while on this durg & unusual rashes which still appear every once in a while for no apparent reason. Id rather suffer from a low immune system than be on this drug for the rest of my life! Read More Read Less
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ashook | 35-44 | Female | On medication for 6 months to less than 1 year | Patient
1/9/2013
Condition: Other
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
After being on Gamunex for aprox 2 1/2 years, I was switched to this medicine because I had symptoms of a TIA (mini-stroke.) Going from once a month hospital infusions to once a week home infusions was a challenge at first. Im glad I did it though. I now only feel tired mainly while infusing and of course have site reactions. The next day I am a new person. I LOVE this medicine now. I used to eat what I want and never gain weight, no diet change yet I have gained about 10 lbs. I could def use it though as I have always been very slender. The few extra pounds help me get more sub-Q tissue so it doesnt hurt. I would recommend using Lidocaine before to numb sites as it helps me ALOT. Without it, i am not sure I could do it. I have been on this medicine for about 6 months now and would highly advise this method and medicine over IVIG to everyone. No more roller coaster ups and downs between treatments. I am on 12g via 3 sites weekly. It takes me aprox 2.5 hours to infuse and have the freedom to take it on the go if I have to. I can not say enough of how this medicine has changed my health and my life. I am very thankful I was switched to it :o)Read More Read Less
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Nana | 45-54 | Female | On medication for 6 months to less than 1 year | Patient
9/5/2012
Condition: Primary Immune Deficiency Disorder
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction
I was on IVIG for years, but my veins were done. I also wanted to be prooactive about my care. On sub-q since last Christmas. Did have a few troubles, but my dispensing doctor is not very familular with this medication. I am transfering drs. Gained a little weight, but came off. The day of and day after are not good, but can function somewhat if I need to. I have got the infussion sites running well and am overall happy with this treatment.
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Garliclover | 45-54 | Male | On medication for 1 to 6 months | Patient
8/25/2012
Condition: Primary Immune Deficiency Disorder
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction
I have recently moved from Vivaglobin to Hizentra. The side effects are similar however chest discomfort dizziness and fatigue are apparent, I have been administering 7wks now. The soreness at injection site is quite a discomfort for 6 days after - the biggest negative.
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