A Patient’s Story: See the Difference Maintaining Steady Ig Levels Can Make in PI

This podcast is sponsored by CSL Behring, manufacturer of Hizentra, subcutaneous immune globulin.
In this episode, we will discuss Melaine's journey with PI, from her experience with IVIG, to her switch to subcutaneous IG, and what that meant in terms of self-administering her treatment at home. Melaine enjoys cycling, gardening, travel and she's also living with primary immunodeficiency or PI. Melaine will be sharing her story and also providing some information about Hizentra, for which she is a patient advocate. Patient advocates are not healthcare professionals or medical experts. For medical questions or advice, please contact your physician. Patient advocates are compensated by CSL Behring, LLC, for their time and/or expenses. 

Transcript

Hello and thank you for joining us today. My name is Abbie Cornett, and I am the patient advocate for IG Living magazine. This podcast is brought to you by IG Living magazine.

Ig Living Advocate Episode 15, A Patient's Story: See the Difference Maintaining Steady Ig Levels Can Make in PI. This podcast is sponsored by CSL Behring, manufacturer of Hizentra subcutaneous immune globulin. In this episode, we will discuss Melaine's journey with PI, from her experience with IVIG, to her switch to subcutaneous IG, and what that meant in terms of self-administering her treatment at home. Melaine is a wife, mother and retired restaurant manager. Melaine enjoys cycling, gardening, travel and she's also living with primary immunodeficiency or PI. Melaine will be sharing her story and also providing some information about Hizentra, for which she is a patient advocate. Patient advocates are not healthcare professionals or medical experts. For medical questions or advice, please contact your physician. Patient advocates are compensated by CSL Behring, LLC, for their time and/or expenses.

Let's start with a little about what Hizentra is:

Hizentra Immune Globulin Subcutaneous Human 20 Percent Liquid is a prescription medicine used to treat primary immune deficiencies (PI) in patients 2 years and older and chronic inflammatory demyelinating polyneuropathy (CIDP) in adults.

Abbie: Melaine, thank you for joining us today.

Melanie: Thank you, Abbie, for inviting me.

Abbie: Can you please tell us a little bit about yourself and what it's like living with primary immunodeficiency? You know, when were you diagnosed and what do those conversations with your doctor look like?

Melanie: Well, Abbie, I had a lot of hospitalizations, multiple pneumonias per year, other infections that were difficult to treat. I had problems with my pregnancies and ongoing rounds of antibiotics. You see, I was the sick kid, from the day I went to school all through college, and I frequently was misdiagnosed. We were just managing symptoms and not really the underlying cause, which was PI. So getting diagnosed and learning about primary immunodeficiency — it's a part of your immune system that isn't working properly and we're born this way, so it is a challenge to get diagnosed sometimes. But then comes the realization of living with a lifelong condition and ongoing treatment.

There are 485 types of PI that I learned, and I have CVID, which is common variable immunodeficiency. Well, there was a big impact in my family, and I was told in the beginning of treatment that I might have five years to live. And I remember fear growing, but I also remember a sweet time when our preschooler went with us to the plasma donation center, and he walked around to each donor and said, "Thank you for letting my mommy live."

Abbie: That's a really sweet story. Thank you for sharing it. Um, were you prescribed IVIg right after diagnosis? And what was that experience like for you?

Melanie: Well, IVIg does work well for many patients, but I had several challenges, and my experience with it was a little more difficult than I anticipated. With IVIg, you infuse through a vein, and with subcutaneous Ig, you infuse through the skin into the fatty layer like into your thigh or your abdomen. Well, for IVIg for me, it was truly an adjustment; we tried different frequencies, different amounts of the product during the infusions — just trying to make things better. And my experience at that infusion center was really a struggle.

I remember nursing my baby because I would be there for 10 hours, my husband would bring him in a couple of times. It was a really a hard time for our family just trying to adjust to the treatment. I also struggled with my pregnancy and parenting because there were lasting side effects of that treatment.

Abbie: So how did you feel while you were on IVIg, particularly regarding your energy levels, side effects and your proneness to infections?

Melanie: My energy level was very low due to the fluctuating Ig levels in between my infusions, and I was also still trying to parent two small kids. For me, the treatment of IVIg hurt. I looked sickly with all the bruises from failed attempts or blown veins. It also took significant time out of my life for my IVIg infusions. They would take between eight to 10 hours, and I endured days of recovery for the side effects of severe headaches and muscle pain, the bruises from the needle sticks, as well as fatigue, flu-like symptoms and fever in the weeks leading up to my next IV infusion.

Abbie: What led up to your switch to Hizentra?

Melanie: Well, I was in search for a different treatment, and I learned about subcutaneous Ig at a patient conference and was later able to participate in a clinical trial. I was excited to learn more and get involved with finding new treatments that weren't available in my earlier years; it was giving me hope for the first time in my diagnosis.

Abbie: Before we speak more about Hizentra, let's share some important safety information. Warning: Thrombosis (blood clots) can occur with immune globulin products, including Hizentra. Risk factors can include advanced age, prolonged immobilization, a history of blood clotting or hyperviscosity, blood thickness, use of estrogen, installed vascular catheters and cardiovascular risk factors. If you are at high risk for blood clots, your doctor will prescribe Hizentra at the minimum dose and infusion rates practicable, and will monitor for signs of clotting events and hyperviscosity. Always drink sufficient fluids before infusing Hizentra. See your doctor for a full explanation and the full prescribing information for complete boxed warnings.

Treatment with Hizentra may not be possible if your doctor determines you have hyperprolinemia, too much proline in the blood, or are IgA deficient with antibodies to IgA and a history of hypersensitivity. Tell your doctor if you have previously had a severe allergic reaction, including anaphylaxis, to the administration of human immune globulin. Tell your doctor right away or go to the emergency room if you have hives, trouble breathing, wheezing, dizziness or fainting. These could be signs of a bad allergic reaction. Inform your doctor of any medications you are taking, as well as any medical conditions you may have had, especially if you have a history of disease related to the heart or blood vessels or have been immobile for some time. Inform your physician if you are pregnant or nursing or plan to become pregnant.

Now back to our interview with Melaine. When you switched to subcutaneous Ig, what were the biggest changes you noticed? And when did you switch to Hizentra?

Melanie: Well, I learned about steady state Ig levels, and I was missing fewer activities due to feeling ill. I really had the freedom to infuse when and where I wanted after working out a treatment schedule with my doctor. And I like that subcutaneous Ig doesn't have an IV involved. And I really prefer this type of infusion because there's a needle, but it's really tiny. And I would have less frequent and extreme symptoms.

Abbie: When you mentioned steady Ig levels, let's take a moment to talk about that. What does that mean? For those who don't know, how would you describe a steady Ig level?

Melanie: It's the highs and the lows of IVIg. And getting to that steady state for me was challenging. But with Hizentra, I can have more frequent smaller doses that really help to create steadiness in my Ig levels.

Abbie: How does steady Ig levels make a difference in how you feel, Melaine?

Melanie: Well, I had fewer side effects due to the smaller dose of Ig. And I no longer feel like I'm on that roller coaster of highs and lows in my levels. Steady Ig levels for me mean I'm a victor, not a victim, of PI. I feel more in control of my health by scheduling my home infusions with no real time lost enduring painful side effects.

Abbie: So Melaine, how long did it take you to notice the difference with steady Ig levels?

Melanie: Abbie, it took a few months into the treatment to adjust, but I had this "aha" moment. And I remember being in the kitchen, cooking dinner, my husband coming home from work, and he said, "Hey, I left your antibiotics on my desk in the pharmacy. I'll go back and get them after dinner." Well, I remember stopping and going to the cabinet and I found this full bottle of antibiotics. And that's when I realized that I had gone the longest time without using an antibiotic that I remembered.

Abbie: And Melaine, how has that changed your experience in managing PI?

Melanie: Well, these experiences will vary for different people. But for me, I'm now not missing work or kids' events. We get to plan for the future, and I'm so excited for vacations with my husband. And these are things I didn't think I could do before. There are everyday things that a lot of people take for granted, like going to the grocery store, taking fitness classes and going to lunch with friends. But now I do those things regularly.

Abbie: Did your healthcare provider discuss the importance of achieving steady levels of Ig with you?

Melanie: Well, for me, Abbie, it took some time for my healthcare providers to really help me find an effective treatment routine and maintain steady Ig levels. And I feel there really has been an evolution of understanding among these healthcare providers.

Abbie: What would you tell others with PI who aren't aware of the benefits of the steady Ig levels?

Melanie: I would encourage people to talk with their doctor about how they feel right before their infusions. Are there some highs and lows, more infections? How are you feeling during the weeks leading up to that infusion? And how do you feel during your infusions? Or what side effects might you be feeling? Have an honest conversation with your doctor.

Abbie: We're going to talk a bit about self-infusion. But before we go any further, here is some additional important safety information about Hizentra.

Infuse Hizentra under your skin only. Do not inject into a blood vessel. Self-administer Hizentra only after having been taught to do so by your doctor or other healthcare professional, and having received dosing instructions for treating your condition. Immediately report to your physician any of the following symptoms, which could be signs of serious adverse reactions to Hizentra: Reduced urination, sudden weight gain or swelling in your legs, possible signs of a kidney problem, pain and/or swelling or discoloration of an arm or leg, unexplained shortness of breath, chest pain or discomfort that worsens on deep breathing, unexplained rapid pulse, or numbness, weakness on one side of the body, possible signs of a blood clot, bad headache with nausea, vomiting, stiff neck, fever and sensitivity to light, possible signs of meningitis, brown or red urine, rapid heart rate, yellowing of the skin or eyes, chest pains or breathing trouble, fever over 100 degrees, possible symptoms of other conditions that prompt treatment.

Melaine, now I'd like to talk about self-infusing treatment. Self-administration can be scary for many people. Did you have any concerns or fears initially?

Melanie: I did. I was excited to try a new way and get my Ig levels stabilized, but I had fears and a little bit of concern about sticking myself because I had so many difficulties with my veins during IVIg. And, there were multiple infusion sites with Hizentra.

Abbie: So how did you overcome your initial concerns and become more at ease with infusing Hizentra? And are there any additional challenges you had that you learned how to manage?

Melanie: Well, I talked with my nurse who was the one who trained me on doing self-infusions, and I really gained confidence within the first month of treatment. The size of the needles were much smaller than IVIg needles, but it did take some time to learn the new process. But I was really willing to put in the effort for the benefits.

Abbie: Melaine, have you experienced any side effects or challenges with your infusions, and how did you learn to manage those challenges?

Melanie: Well, I did observe some local site reactions following the infusions, and for me, the site reactions were not as severe over time. And my doctor really helped me improve my infusion comfort, giving me resources such as ice or heat to make it more comfortable, and then also added hydration so I would feel better.

Abbie: Are there any resources that you'd recommend to help other patients feel confident with their self-infusions with Hizentra?

Melanie: Well, I worked with my nurses on infusion training and Hizentra.com; all things are located in just one spot. And we have a voice-to-voice program where we can speak to other patients, and they can even speak with nurses as well. There's a free trial program that patients can use, and there are patient conferences and other resources that are wonderful that we can share together.

Abbie: What does self-infusion mean for you in terms of control of your treatment and of your life?

Melanie: Well, now I use Hizentra prefilled syringes, and the administration preparation process is simpler for me. Self-infusion means a reliable method for maintaining steady state Ig levels and making sure I can manage my PI on my own schedule with the help of my doctor.

Abbie: You mentioned Hizentra prefilled syringes. How do they make a difference with your infusions?

Melanie: Prefilled syringes really help the infusion process to be less intimidating for me. I've had hand surgery five times. And I find the prefilled syringes to be simpler and convenient. I no longer have to deal with the hassles of a vial.

Abbie: Melaine, this has been a really helpful discussion. Do you have any final thoughts on what you would say to another PI patient? What could empower them to best advocate for themselves in a conversation with their healthcare providers?

Melanie: Well, Abbie, for me, steady state Ig replacement from Hizentra gives me the ability to live my life my way. I can easily fit my infusions into my daily life. But I do understand this can be overwhelming for some patients. So I would definitely advise people to utilize the resources that are available to them, Hizentra.com, our voice-to-voice program.

And I really want to tell you a little bit about the impact of my family. PI doesn't just happen to a person, it happens to the family. And sometimes good things can come along the way. Our oldest son, he finished his PhD in immunology research recently, as he reminds me of our dinnertime conversation where my husband was trying to help figure out a better way of treatment, perhaps. We've been married 38 years, and he's been married to the healthier woman of today than he has been to that sick girl. Well, our youngest, I'm still around watching him, and his business career is soaring. And for others, please talk to your doctor if you want to learn more about Hizentra.

Abbie: Melaine, thank you for speaking with us today. It's been a real pleasure, and I'm sure our audience will be very happy to hear your story.

Melanie: Thank you so much, Abbie, for having me. I appreciate it.

Abbie: Before we conclude our interview, here is some additional important safety information. Hizentra is made from human blood. The risk of transmission of infectious agents, including viruses, and theoretically Creutzfeldt-Jakob disease (CJD) agent and its variant (VCJD), cannot be completely eliminated. The most common side effects in the clinical trials for Hizentra include redness, swelling, itching and/ or bruising at the infusion site, headache, chest, joint or back pain, diarrhea, tiredness, cough, rash, itching, fever, nausea and vomiting.

These are not the only side effects possible. Tell your doctor about any side effect that bothers you or does not go away. Before receiving any vaccine, tell immunizing physician if you have had recent therapy with Hizentra, as effectiveness of the vaccine could be compromised. Please see full prescribing information for Hizentra, including boxed warning and the patient product information. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit FDA.gov forward slash medwatch (FDA.gov/medwatch) or call 1 (800) FDA-1088. You can also report side effects to CSL Behring's Pharmacovigilance Department at 1 (866) 915-6958.

This podcast is sponsored by CSL Behring, manufacturer of Hizentra, subcutaneous immune globulin.

Abbie: Listeners, thank you again for joining us today. Additional information regarding this podcast can be found on our website at www.igliving.com. If you have a question that was not answered, please contact me at acornett@igliving.com.

Look for the next IG Living Advocate podcast announcement on our website for the opportunity to submit your questions.

IG Living Advocate is a copyright production of IG Living magazine published by FFF Enterprises. It is the only magazine for the immune globulin community comprised of patients who suffer from chronic illness and their caregivers.