The Infusion Experience: A Personal Perspective

Esther Nelson

Dear Patient,

I would like to share my personal experience with infusion treatments for pemphigus vulgaris (PV), including details about what to expect throughout the process. There is a lot to know, but don’t worry—it’s going to be okay. Really. I’ve been through infusions many times and I’m fine. You will be too. Please remember that I am a patient, not a doctor, and I’m sharing what has worked for me with the hope that you will find this helpful. It is important to work directly with a dermatology specialist in pemphigus, if possible. The IPPF maintains a Find a Doctor list (pemphigus.org/ find-a-doctor/) if you need assistance locating a medical professional.

I have been a PV patient since September 2013 and my most recent flare was from November 2023 through March/April 2024. Over the years, I have received both Rituxan ® (rituximab) (pemphigus.org/rituxan/) and intravenous immunoglobulin (IVIG) therapy (pemphigus.org/treatments/). I have had many infusions in the outpatient area of a major hospital (Mount Sinai in New York City) and then recently in a private infusion center (the American Infusion Center in New York City). Dr. Annette Czernik is an excellent specialist who I worked with for many years. She is an IPPF Medical Advisory Council member and recently presented on IVIG for a Patient Education Series webinar (pemphigus. org/patient-education-webinars/). My current doctor, a dermatology specialist in pemphigus, is Dr. Jacob Levitt (in New York City). He has been very responsive and helpful to me.

Rituximab and IVIG

Rituximab is a Food and Drug Administration (FDA)-approved medication for PV given via infusions that recalibrates the immune system. It’s like pushing a button, and over 3 to 6 months it takes you back to what your body’s immune system was and should be: normal and working well. Life may feel like it was before your diagnosis. Instead of rituximab, some doctors or insurance companies may prescribe or approve a similar infusion called a biosimilar. An example of this is Truxima ®, which I had last year. For more details about biosimilars and generic medications, visit the IPPF’s Patient Resources webpage (pemphigus.org/ patient-resources/).

IVIG is also given intravenously. It is clear colored even though it comes from human plasma and contains antibodies which may heal you quicker than rituximab. I found that the IVIG infusions went smoothly and helped to heal me quicker while the rituximab was doing its job. As a result of my experiences, I would like to share some tips with you:

One month before the infusion:

• It is important to make sure that your doctor prescribed the correct infusion. In a hospital, it may be easier because they most likely have a department that deals with infusion insurance. Work with your doctor on this.

• If you’re going to receive the infusion in a hospital, it may take up to a month before you find out the infusion dates and type of medicine. If it’s in a private infusion center, you will likely receive the infusion much sooner.

• Your insurance company, doctor, and the infusion provider may bring up the topic of biosimilars. This can get complicated. However, speak to your doctor about this.

• While you are waiting to receive an infusion, you might be experiencing difficulties with eating food. Consult with your doctor if you’re having problems in your mouth. In my experience, it was helpful for me to avoid salty, hot, cold, or crunchy foods.

◊ Cooking in the microwave became my new best friend for many months. The food was quick, soft, and easy to digest. It just slid down my throat. I also prioritized eating enough protein, such as chicken and salmon. If you’re vegan or vegetarian, it’s important to figure out which foods give you the vitamins that you need. Also consider protein shakes with high protein levels. (Been there, done that!)

◊ You may also talk to your pharmacist about what to eat (and when) if you’re taking other medication. Not all doctors will provide these details, and it’s okay to ask.

◊ Food is medicine and you are your own doctor, too.

• Consult with your doctor about your medication dosages (including vitamins) for the day of the infusion.

Approximately one week before the infusion:

• Visit the infusion center in person. This may help you feel more comfortable with the surroundings by knowing what to expect and meeting the staff members.

◊ Determine whether the room has a bed, reclining chair, and/or a television. You want to feel comfortable since you will be spending most of the day in the room.

◊ Ask if they provide lunch or snacks. If they don’t, I recommend bringing food with you.

◊ Especially if this is your first infusion, I recommend talking to someone you trust and feel comfortable with such as a family member or friend.

One day before the infusion:

• I recommend drinking a lot of water. It’s important to be hydrated because when you get to the infusion, you want the nurses to find your veins easily and being hydrated helps with that.

• Gather items to take with you to the infusion such as a bottle of water, something to read or a game to play, food (something you can eat with one hand), something to do that is relaxing (and preferably not related to your job), comfortable clothes, and a cozy sweater or light blanket.

• I also recommend telling a friend, relative, or someone about the infusion. This might help you feel better emotionally.

• Check with your doctor about what you should eat the morning of the infusion.

• Get a good night’s sleep. It’s going to be okay.

The day of the infusion:

• Arrive a bit early. Relax.

• The staff will welcome you to a room or chair. Relax. It’s okay. They know what they’re doing. Chit chat with them! Let them get to know you. They can talk and distract you. Tell them if you’re scared. I was scared, and I’ve always hated needles. Make jokes if it helps!

• They may give you a blood test. They will likely test your blood pressure and your heart rate, at least at the beginning, maybe every 15 minutes for the first hour. Then they will look at your veins. They are the “vein whisperers.” But if your veins don’t speak to them, they will give you a heating pad which you’ll put on both hands to warm them so the veins come to the surface, ready to face the day. It’s okay. Breathe.

• Before the infusion starts, ask the infusion staff to administer the medication as slowly as possible. In my experience when the speed was raised every 15 minutes, the infusion felt like a waterfall rushing and gushing through my veins.

• To be more comfortable, it’s a good idea to ask for some or all of the following: a pillow to put under your arm with the IV, an extra pillow for your back, a blanket, instructions for using the bed or chair, snacks, a call-bell (if you need the nurse), and something to cover your arm if seeing the needles bothers you.

• On a big metal pole, they will set up a bag of saline solution (salt water), a bag of liquid antihistamine, and a bottle of the infusion medication. The antihistamine can help with preventing hives or allergic responses. They might also give you a pain reliever and water so your stomach doesn’t feel queasy. I recommend verifying the infusion medication by looking at the bottle. They may give you some type of prednisone orally.

• If you need to go to the restroom, take it slowly because you will be taking the pole with you. Be careful how you move your hand with the IV attached. Ask for help if you need it.

• The antihistamine might make you feel sleepy so you may decide to take a nap. That’s fine; it will help pass the time.

• Try to relax by reading, calling people on the phone, watching a movie, chatting with the medical staff, and eating lunch or snacks. In my experience, an IVIG infusion lasted about 4-5 hours, while Rituxan® lasted about 6-7 hours.

• When the infusion is over, try to relax and determine how you feel and whether you need someone to drive you home.

• I found it helpful to drink water the rest of the day.

The day after the infusion:

It’s also important to stay hydrated on this day too. One side effect the day after is getting a migraine, which I had once and never want to have again. I believe that staying hydrated will help you feel fine.

So dear patient, I hope this information has been helpful. Reach out to me (egn5@hotmail.com) or the IPPF if you have additional questions. We are here for you and understand what you are going through. There are IPPF support groups throughout the US that meet virtually. Visit the IPPF Events calendar (pemphigus. org/events/) for information on meetings, webinars, and events to connect with us. It’s going to be okay. You’ll see.

Sincerely,

Esther Nelson

Esther Nelson, a PV patient and the Tri-State Support Group Leader, enjoys the outdoors, traveling, learning languages, and cooking. She teaches English to immigrants.