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User Reviews for Cuvitru to treat Primary Immunodeficiency Syndrome

Cuvitru has an average rating of 8.8 out of 10 from a total of 9 ratings for the treatment of Primary Immunodeficiency Syndrome. 78% of reviewers reported a positive experience, while 0% reported a negative experience.

Cuvitru rating summary

8.8/10 average rating

9 ratings from 12 user reviews.

Compare all 21 medications used in the treatment of Primary Immunodeficiency Syndrome.

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11%
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Reviews for Cuvitru

SherlockianOne · 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 a 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 infusion site, for about 12 hours...gone next day. Sometimes exhaustion that literally can knock me out for anything up to 2 hours in 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 not longer sweat being around children or adults who are coughing. The weekly infusion does run my life on that day, but the tradeoff to be healthy and not sick on antibiotics 4 plus times a year (often with second rounds) makes the tradeoff worth my while."

9 / 10
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Clovers_mom · Taken for 1 to 6 months · August 11, 2017

"What a savior! After enduring 6 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 an 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!"

9 / 10
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A.C. · 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 80mL 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 50mg 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!"

10 / 10
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Frequently asked questions

Reta · 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"

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SHEKFirst · 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!"

10 / 10
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Jana · 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 Leviquin. Which is a very strong antibiotic. What cancer patients take. Now I’m immune to them. I started out with hizentra for about 4 years and first it helped some. But still had my twice a month sinus/ear infections. So 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 bad from the Cuvitru."

5 / 10
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Hopeful · Taken for less than 1 month · April 14, 2021

"I have not been well for the last 14 years NTM infection /COPD /bronchiectasis IGG2/IGG4 Deficiency sinunitis many chest infections I have started on Cuvitru coming up on my fourth treatment. I have been hearing so many positive comments and this is my last resort. I’m really hoping that this will give me some energy something more of a normal life. My doctor is amazing, so happy to have crossed paths with this program and the staff are absolutely fantastic patience and kind and understanding , Looking forward to sharing my positive stories will be in touch till then stay healthy stay safe"

7 / 10
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Volleyballmike · 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 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 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."

9 / 10
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Pros and Cons · Taken for 2 to 5 years · December 22, 2021

"I have had good success with this medication treating my immune deficiency. However, I am experiencing hair loss!!! I have found other patient testimonials discussing the same issue. I’m curious if other Cuvitru patients are noticing a similar side-effect."

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Piper · 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 less 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."

10 / 10
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DomsMomONE · 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 1000. He isn't sick often. He has no bad side effects and the convenience of doing it at home has been wonderful as well."

10 / 10
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Tammy · 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 & lung issues. I am very pleased with my outcome I have more energy less infections over all 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 and thank you to all who donate❤️"

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This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.