Reflecting on My First Month on Hizentra

Dawn DeBois avatar

by Dawn DeBois |

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I have completed my first month on Hizentra (immune globulin), and I am ready to share my experience. (It’s important to note that I am not sponsored, paid, or endorsed as a product ambassador. This column is based on my experiences with Hizentra — other people may have different experiences with this therapy.)

While learning this alternative way of giving myself immunoglobulin G, or IgG, the differences in my body’s response to the treatment have sparked a running commentary in my head.

In this week’s column, I hope to answer some of your questions about my experience with Hizentra.

Do you infuse on the same day each week?

No! It’s been freeing to have flexibility with my infusions. My prescription is for once every seven days, but I have a day or two of wiggle room.

Last week, I had planned to infuse on Wednesday night but I received a last-minute invitation to dinner that evening. I simply moved my subcutaneous (Sub-Q) plans to the following day. The option to adjust my infusing schedule is a welcome change from the days when my social life revolved around intravenous immunoglobulin (IVIG) replacement therapy treatments. Dinner and shared laughter with my friend were the priority that night.

How long does the infusion take?

Infusing takes about an hour and 40 minutes. It takes about 10 minutes to set up and another 10 minutes to remove the needles, clean up, and document the infusion, so I set aside two hours for the entire process.

Do you put the needles in yourself?

Yes, even with my fear of needles! The needles are so tiny that I don’t always feel them. My training nurse was impressed with my newfound ambidexterity when I used my right hand for my right-sided needles and my left hand to insert the left-sided ones. It was easier to see exactly where I was inserting that way.

Where do you insert the needles?

The Hizentra website has clear diagrams showing that it’s OK to use your belly, thighs, and parts of your upper arms. If you are on autoimmune dosing, however, using your arms might make them uncomfortable until the Hizentra is absorbed.

What about site reactions?

I had swelling under the skin until the Hizentra was absorbed. When I infused through my belly, it was distended for about 24 hours. On my thighs, the swelling is a bit less. It makes the skin appear tight and as if I have large mosquito bites for the first 12 hours. My routine is to take a nap with a heating pad on my belly and lap to help speed up the absorption.

I’m skinny. I wonder how it will work with my body type?

My extra layer of body fat has been advantageous for doing Sub-Q. (High-five for extra body fat!) I have plenty of areas that Hizentra can be administered comfortably. But even if I had little body fat, I would still give this treatment option a try. I no longer have to endure nurses looking for veins, and the side effects that I experienced with IVIG have been negligible with Sub-Q.

What are the differences in side effects?

A notable difference is that my blood pressure no longer drops during my infusion. That had been a serious concern for me. The post-IVIG migraine is also much less of an issue. I woke up one day with the telltale eye socket pain that people on IVIG recognize and counted how many days it had been since I’d infused. Sure enough, the headache hit at day four post-infusion just like with IVIG. But I only needed one Tylenol (acetaminophen) to bring it under control.

My acetaminophen intake is now exponentially less than when I was on IVIG. On the day I infuse, I take 500 milligrams at the start and a second dose six hours later. Most weeks, I’ve not needed any other acetaminophen to manage a post-infusion headache. I used to take 1,000 milligrams multiple times during IVIG week.

Do you get the same benefits as you have with IVIG?

Honestly, I feel I have gained far more benefit from Sub-Q than IVIG. My body isn’t expending all of its energy on recovery — I now have more energy between infusions.

I’m finding I only need six to seven hours of sleep a night and without a nap every day. I’m also finding the energy to tackle organizational projects that I had put off. This energy level remained consistent through what would have been my IVIG week. Not having the valley of exhaustion due to the IVIG half-life was like receiving the best birthday present ever.

Perhaps now I have found the energy to write my first book.

Note: This column is based on my self-infusion experience with Hizentra. Please consult your doctor before trying a new medication or treatment.

***

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.

Comments

Graham Bigland avatar

Graham Bigland

I am in Canada. Recently there was a recall of Hizentra. The batch I was injecting at the time was recalled. Were you affected by the recall. I got zero, I mean zero assistance in getting the batch replaced by the manufacturer of Hizentra (CLS Behring) who were of no help at all. They did not even inform me of the recall, I found out through a patient support group. Since the product is distributed by the blood banks of hospitals in Canada, CLS Behring informed me that I should contact them. At the time of the recall I was out of the country for 3 months and you would not believe the issues I had to go through to get the Hizentra to me. Shocking Customer support. Hope you were not affected.

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Dawn DeBois avatar

Dawn DeBois

Hi Graham,
I apologize for not answering sooner. I looked up the recall you mentioned, and it appears that the recall of Hizentra was with their injectable syringes? My Hizentra comes in prefilled bottles that I then fill into my own syringes so I have not been affected by the recall.

I'm so sorry you had a poor experience with customer support. If you would like another follow up with them, send me your e mail address to [email protected] I've had many contacts with their team due to my columns about Hizentra; and I can ask them to contact you if you would like further support.

Please stay safe,

Dawn

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Graham Bigland avatar

Graham Bigland

Hi Dawn, just read your response. Thanks for the offer to follow up with customer support. I have contacted them many times re the above issue and have had not been inspired by their responses. This issue is now in the distant past. I fear further contact by me, to "The Hizentra Care Program" would not be fruitful!!

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Pat E Brown avatar

Pat E Brown

Hi, Dawn. Thank you for your tips! I just had my first sub-q infusion yesterday. I’m already worrying about where to put needles next time! I had 3, and I really don’t like this “pouch” on my belly! I’ll try the heating pad next time! I may try the thigh next time, too. Do u like that better? I drank 70 oz water before infusion n maybe 48 after. I woke up n night chilling n neck ache. But, feel fine this morning. If I use more needles, will that be better 😬? Did I mention that I HATE this? Thank you for listening. Pat Brown— Oklahoma

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Dawn DeBois avatar

Dawn DeBois

Hi Pat,

I have found from my experience and that of a friend who switched from IVIG to SubQ at the same time that the first infusion is the toughest. The swelling isn’t nearly as bad once your body gets used to it.

I understand not liking the belly pouch that happens; but honestly, I prefer that over bruises up and down my arms from IVs that were missed.

They started me on 6 needles, which was interesting to rotate. Now I am on 4. I like having the thighs for an option but have noticed more bruising and there is less room to maneuver during the infusion when hooked up to the thighs. Just make sure you make note of where your needles were on your belly so that it’s easy to rotate the next.

I understand hating to have to do something like this on a regular basis to keep your disease state managed. However, I appreciate being able to do this at home over having to go into an infusion center for days and hours on end!

Good luck and let me know if the next one is easier!

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Grant Phillips avatar

Grant Phillips

Great to read about other's experience with Hizentra. I’ve been on it for almost a year and a half due to CIDP. I get my infusions through Coram (A CVS co.) covered in my insurance and honestly they have been great. The only thing is that it’s insanely expensive, it looks like for the near and possibly far future I’ll be hitting my max out of pocket easily. Not sure if anyone has been able to save $ by ordering through the distributor?
Also side note, I am pretty skinny and have 3 injection sites pure weekly treatment and I don’t have too much of a problem. Sure it gets irritable, uncomfortable and stings every now and then, but I haven’t found too much of a problem with it. I quit trying to use my inner thigh though, I have zero fat there and it wasn’t worth using that area one bit. So glad you were able to get off that horrid IVIG and still find the same if not better results with Hizentra.

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Carlos Galindo avatar

Carlos Galindo

Hi Dawn,
Thank you so much for writing this column, it is helpful and it gives me hope that the hizentra medication will start working soon. I was first diagnosed with myasthenia gravis in 1999 and had a thymectomy which allowed me to gain back about 95% muscle strength by the end of 1999. I was medication free for 15 years and in 2015 my symptoms returned. I have been taking mestinon, cellcept, and prednisone since, but two and a half years ago I started to do a study drug at OHSU called ARGX-113. This infusion would be administered once a week for four weeks then for four more weeks without it. Unfortunately, I would start feeling symptoms returning on the third and fourth week without it. Rightfully so, being it was a study drug they needed data points of how I felt with and without it. The study was coming to an end so my neurologist decided to put me on hizentra. I've done three infusions now and still feel really bad, granted I feel like there is little improvement in the mornings, but not nearly enough to make a considerable difference. I take five needles and still trying to get used to the pooch on my belly after the infusion. If this medication takes away the symptoms well, the pooch belly will be the last thing on my mind. I got my fingers crossed and hoping for the best. Hope you are doing well.

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Jae Carder avatar

Jae Carder

Anyone use the hizentra pre filled syringes? I did for my trial and ready to go forward on my home self admin program. Having hard time finding a speciality pharmacy that can supply the pre filled syringes. Would love names and numbers of speciality pharmacy that can supply me with what I need! So frustrated!!

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Donna avatar

Donna

I have been doing infusions sine March/2021. I do four needles once a week for about an hour. I prefer the back of the arms so I can move around get my breakfast.. when I did my thighs last week, have a small bruise and small lump. I am lucky in Ontario Canada that I don’t have out of pocket expense for any of this. Yes I hate doing it already, but has helped my antibodies already. I was on cuvitru now hizentra. Since starting this I now ha e swollen legs all day. Goes away during night. Taking water pill for four days now but not stopped swelling

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Graham Bigland avatar

Graham Bigland

Hi Jae,

Not sure when your post was written, just seen it now. I have been using Hizentra prefilled syringes for 2 years or so and have had no issues with the injections. I did however have an issue with a product recall and lack of support from the Hizentra distributors here in Canada (CLS Behring) and their "support group". Afraid I cannot help with finding a specialty pharmacy, as here in Quebec, Hizentra is provided free of charge by Hema Quebec, the organization that manages blood products (blood donations as well) and I pick the product up every 2 months at the blood bank of my local hospital.

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Jennifer avatar

Jennifer

Hi I am curious to everyone who is on Hizentra what their side effects are. I have been on it for over two years for Primary immune deficiency and seem to be having more side effects now then I was a year ago, just curious if anyone else has experienced that?? I am also curious is there anyone who has multiple illnesses that might be a factor?? Thank you

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