Tag: SCIG

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Health Information IG Therapy

When Your IG Therapy Makes You Feel Worse

Infusion treatment at home with CSI Pharmacy

As with most medications, immune globulin (IG) therapy can cause side effects. If your IG infusion leaves you with these uncomfortable symptoms, the good news is most of the time there are things you, your nurse, or the prescriber can do to make side effects less likely and relieve them if they happen.

Infusion reactions are most common if you use intravenous immune globulin (IVIG) rather than the subcutaneous form (SCIG). IG infusion nurses and pharmacists are usually very familiar with the types of reactions that can occur during or after your infusion, and they know how to respond to them. Rest assured that your nurse will be with you throughout your infusion to monitor for any reactions and respond to them.

Premedication can be one way to avoid reactions from occuring. Along with IG infusions, prescribers often prescribe over-the-counter pain medications, such as acetaminophen (Tylenol) or ibuprofen (Advil), and an antihistamine such as diphenhydramine (Benadryl).

Drinking lots of fluids (several liters a day) before, during, and after the infusion will also help. Be sure to hydrate with water not soda, coffee, milk, or other beverages.

Common Symptoms

Headache is one of the most common side effects with IVIG therapy, but usually this is mild. It’s why the nurse will start out running the infusion slowly and increase the rate gradually over the first hour or so. If a headache develops, the nurse will likely run the infusion more slowly to see if this will relieve the pain. Drinking more fluids may also help. If the infusion needs to run so slowly that it will take all day to infuse, it may need to be divided into smaller doses and given over several days.

Other milder symptoms may also occur—with or without a headache—including chills, fever, flushing, dizziness, muscle aches, joint pain, fatigue, nausea and/or vomiting, and rash. If these symptoms are significant, your prescriber may decide to try a different brand of IG. Each brand is slightly different in composition, and some people do better with one brand over another. Your nurse will consult with the pharmacist and/or your prescriber to decide how to best manage your symptoms.

For subcutaneous infusions (SCIG), pain, redness, and swelling at the needle site may also occur. Be sure to let your nurse know if you notice this and if it gets worse during the infusion. One possible solution may be to change or reposition the infusion needle.

If you use SCIG, you may notice lumps under your skin at the infusion site. This is expected and happens because the fluid you are infusing takes some time to be absorbed into your body. If these areas become uncomfortable, you can apply a warm cloth or compress to the area. If they last for more than a day or are painful, call your nurse or pharmacist.

More Serious Adverse Reactions

While headache is a common reaction with IG infusions, it usually goes away during or soon after the infusion, especially if treated with pain medication and hydration.

If your headache continues for days, is especially severe, or you have a stiff neck, drowsiness, high fever, sensitivity to light, eye pain, or severe nausea or vomiting, this is a cause for alarm. These may be signs of a rare reaction called aseptic meningitis (swelling of the brain not caused by infection). You should call your prescriber and the pharmacy and get medical help right away. 

Another rare but serious situation is an allergic reaction (anaphylaxis). This usually happens during the infusion while the nurse is with you. If you get your infusions at home, your shipment from the pharmacy will also include medications the nurse can use to treat this reaction. 

You may notice symptoms of an allergic reaction after the infusion is completed and the nurse has left. Such symptoms may include rash, itching or swelling (especially of the face, tongue, or throat), severe dizziness, or trouble breathing. If these occur, call 911 and get medical attention as fast as possible.

IG may also raise your blood pressure. Your nurse will check this frequently during your infusion. If you have had high blood pressure in the past or are currently being treated for it, please make sure that the prescriber, nurse, and pharmacist are aware. If you check your own pressure, be sure to notify the prescriber if it increases in the days following your infusion.

Other Possible Concerns

IG is made from human blood plasma, so it can rarely cause blood clots. This is more likely in older adults or those who previously have had blood clots, heart problems, or blood circulation problems. Blood clots are also more likely if you have been on bedrest for a long time, are using birth control pills or hormone replacement therapy, or if you have a central intravenous (IV) catheter in place.

Call your prescriber and pharmacist immediately if you have chest pain, trouble breathing, chest tightness, or rapid heartbeats. Other signs of a blood clot can be numbness or weakness, swelling and warmth, or discoloration in an arm or leg.

You should also let your prescriber and pharmacist know right away if you notice that your gums or nose start bleeding, you bruise more easily, it takes a long time to stop a cut from bleeding, you have a fainting spell, you feel like your heart is racing or skipping beats, or you feel unusually tired. These are signs of other cardiovascular problems that may need to be treated.

Sometimes IG can harm your kidneys, especially if you have kidney disease or use certain medicines. Signs of kidney problems include swelling, especially in the legs and hands, rapid weight gain, and little or no urination. Call your prescriber and pharmacy right away if you notice any of these symptoms.

Less of a Concern

Because IG is made with donated human plasma, some people worry about getting a disease from it. The risk of getting an infection from your treatment, however, is almost nonexistent. Modern methods used to purify IG destroy bacteria, hepatitis viruses, and other infectious germs. No one can predict every new infection that may develop, though. This is one of the reasons the pharmacy keeps careful records of the specific IG product you receive.

It’s also important that you keep track of when you get your infusions, the brand, product number, lot number, and any reactions you have around the time of the infusion. This will help you determine which products worked best and can help the pharmacist figure out if you are having side effects related to a specific brand.

Please Ask Questions

Never be afraid to ask questions about any symptom or reaction you have during or after your treatment. Your infusion nurse, pharmacist, and prescriber can all help you understand any reactions you may experience and how to treat them.

Please remember: Every patient is unique in the way they respond to any treatment. Do not hesitate to let your nurse or pharmacist know if you start to notice uncomfortable side effects. Lastly, if you ever experience unusual symptoms that cause you concern, be sure to contact your prescriber immediately.   

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Health Information IG Therapy Patient communities

Choices: IVIG versus SCIG

Good. Better. Best.

Many patients with autoimmune disorders and primary immune deficiency diseases depend on regular infusions of immune globulin (IG) to keep them healthy. For most of the nearly four decades since immune globulin therapies have been available, patients have had only one viable option for how this treatment was given. It was only available as an intravenous (IV) infusion.

Since 2006, however, when the first IG product was approved for subcutaneous (SC) administration, patients have had a choice about how they received their treatments. Both products are considered equivalent in terms of efficacy, but there are lots of other factors that may make one preferable over the other. Providers usually have their own sense about how IG should be administered, but we asked IG users for their thoughts on the pros and cons of each option.

Convenience is the biggest factor in which route patients prefer. Ironically, both IV and SC users think their choice is most convenient.

Rebecca, for example, has been getting IVIG for 12 years after being diagnosed with common variable immunodeficiency (CVID). She speaks for many when she says, “I like that I only sacrifice one day every three weeks for treatment.”

The convenience of once-a-month infusions with IVIG comes at the expense of independence, though. IVIG poses higher risks, because it goes directly into the vein rather than under the skin. So it must be given under a nurse’s supervision, whether that is in the hospital, an infusion center, or at home. This means it also has to take place on a schedule that may not always be convenient.

Those who use SCIG usually take their infusions once a week rather than once every three to four weeks or so. Still they prefer the control they have over when they infuse, because they do it themselves. As Brandina, who has myasthenia gravis, says, “I love that I can administer it myself. The treatment days are flexible, and I can take the medication with me, so I don’t have to plan my vacation around treatments.”

Infusing once a week is also inconvenient for some SCIG users, but for most this is a minor drawback. As Jen, who has specific antibody deficiency, says, “I absolutely love SCIG. There are so many more pros that I could list and only this one con.”

Getting infusions at home, whether it is IV or SC, is also a convenience. This has become especially important since the COVID-19 pandemic has made it less desirable to go to a healthcare clinic. Brynne, whose six-year-old daughter uses IVIG for juvenile dermatomyositis (JDM), was grateful when her overnight hospital infusions were changed to in-home infusions because of coronavirus restrictions.

Making the most of infusion time is something IVIG users have worked into their lives. Sitting in an infusion center or even hanging out at home with a nurse for six to eight hours or more can be a huge inconvenience, but it doesn’t have to be wasted time. Dana, who has dermatomyositis, likes IVIG, because it forces her to take time for herself and relax. And Robin, who has CVID, uses the time to crochet.

Mary, whose husband has myasthenia gravis (MG), prefers to get his IVIG at the hospital infusion center for other self-care reasons. “He loves the heated, vibrating recliner,” she says. “And they provide snacks and lunch.”

Adverse effects can be more of a problem with IVIG. In fact, this is often the reason patients switch to SCIG, which has far fewer reactions. Symptoms can range from fatigue, fever, flushing, chills, and ‘‘flu-like’’ symptoms to more life-threatening reactions like anaphylaxis (severe allergic reaction) and blood clots.

The most frequent side effect is headache, which can last several days and be more severe than a migraine. Some, like Lola, who has Sjögren’s syndrome, even get aseptic meningitis (inflammation of the membrane covering the brain) after infusions. This causes debilitating headaches, dizziness, and other symptoms.

Scar tissue and knots of fluid under the skin from subcutaneous infusions was a drawback for those using SCIG. These knots usually disappear within a few hours, though, and any redness or swelling at the injection site usually decreases over time.

Pain from being stuck with needles is not an insignificant side effect, regardless of whether it’s IV or SC. Whether it’s having to stick oneself multiple times or whether it’s having difficult-to-access veins, nobody likes to feel like a pincushion.

This can be especially challenging for children. Nancy’s nine-year-old daughter has JDM and receives IVIG at a pediatric infusion center. She says having ultrasound to find and insert the IV needle makes a world of difference for her daughter. Being spoiled by the nurses also takes some of the sting out of the whole ordeal.

Fluctuations in therapeutic effect is another reason many people switch to SCIG. An IG dose is mostly metabolized by the body over about 22 days, whether it’s given IV or SC. With IV infusion the dose reaches its peak immediately and dissipates over the next three to four weeks. This means that some patients will feel their symptoms returning as IG levels in the blood go down.

“As I got closer to my next treatment date, I would start to feel the effects of needing my next treatment,” says Karon, who has MG. “After I received it, I could tell I had just received a boost and had more energy.”

Giving IG under the skin makes the blood levels rise more slowly. And because SCIG is given more frequently—usually weekly—IG levels in the bloodstream fluctuate far less, so patients don’t feel that fatigue and other symptoms returning.

Whatever you decide about IG therapy, Lea, who has used IVIG for 22 years to treat CVID, offers this important advice: “You have to listen to your body and watch how it reacts to everything and try things until they work for you.”

For those who would like to learn more about IVIG or SCIG, please contact the CSI Pharmacy advocacy team at [email protected].

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CSI Pharmacy stories

CSI: A Special Specialty Pharmacy

“I’d always had a dream of owning a little mom-and-pop pharmacy,” says James Sheets, CEO of CSI Pharmacy. He’d had a number of jobs working in both big box pharmacies and smaller shops in and around his hometown of Texarkana, Texas, and he preferred a small, local business where he and his staff could get to know their customers.

In 2013, James’s dream came true when he and two other pharmacist friends, Barry Buls and Mark McMurry, had the opportunity to partner up and purchase North Heights Pharmacy, a shop that had been in business in Texarkana since 1975.

North Heights was doing some retail sales, but they also provided medications for some local hospice services. They also did compounding, mixing up specialized medications for individualized patient needs. The plan, when James took over as chief pharmacist, was to build on these services, with outstanding customer service as their main goal.

In a previous job, however, James had started a successful home infusion program. The service provided treatments such as intravenous antibiotics, cardiac medications, and intravenous nutrition. It was a way for patients to receive these intensive treatments at home, rather than having to go to the hospital or stay in a nursing home.

He wasn’t really trying to get back into home infusion services at North Heights, but one day James got a call from a local neurologist who had several patients who were desperate for someone to provide intravenous immune globulin (IVIG) therapy in the home. These were people with chronic inflammatory demyelinating polyneuropathy (CIDP) who had been cut off from this service because the big national pharmacy chain that once provided it had decided it wasn’t getting paid enough by the patients’ health insurance.

“These were patients who were stable on IVIG, who had been doing well for years, yet they were losing their home infusion services,” James says. “Naturally we wanted to take care of them. Some of these patients we knew from our previous experience, so we already had a personal relationship with them.”

So James and his partners decided to go all in with home infusions, especially IVIG. They made some infrastructure changes to add the necessary facilities at North Heights, and they hired Tracy Knox, a nurse who specializes in infusion therapies, to work just with these patients. They also hired several other staff members who were experienced with the processes necessary to administer infusions, including pharmacy technician Natalie Edwards, IV technician Jet Richardson, intake coordinator Vanessa Noble, and Abe Cardenas, who serves as warehouse manager.

The pharmacy also needed a new name, one that more accurately reflected this new focus.  Clinical Specialty Infusions was born and immediately became CSI Pharmacy.

“What really sets us apart is that we’ve developed clinical programs around the different types of patients we serve,” James says.

In addition to people with CIDP, CSI also has patient communities for those with myositis and myasthenia gravis, both rare, autoimmune neuromuscular diseases. A new patient community is also developing with people who live with pemphigus and pemphigoid, which are rare autoimmune diseases that affect the skin and/or mucus membranes.

In caring for these patients, James and his team don’t just take an order from a physician and give the customer the medication. CSI hires or contracts with infusion nurses who know how best to administer immune globulin and how to monitor the patient during and after the treatment. More than that, though, they work with the whole CSI team, including physicians, pharmacists, patient advocates, and insurance staff to be sure the patient receives the individualized care they need.

More importantly, because staff spend so much time with patients, both administering the medications and working to get insurance coverage for these expensive treatments, they get to know them as friends not just patients. Staff and patients exchange personal stories, check in with each other, and share the success when the patient’s condition improves.

Infusion nurse Tracy Knox, for example, has been working with James since the beginning. “I can see the difference I’ve made in people’s lives, and I like that,” she says. “I’ve been doing infusions for this one patient for many years now. She used to have to use a wheelchair, but now I see her in Walmart and she’ll say, ‘Look! I can walk with a cane now!’”

Over the past few years, CSI has grown from a small, hometown pharmacy into a thriving nationwide specialty pharmacy with two physical locations and plans for more and a mission to make sure every patient receives the care she or he needs regardless of how much they get paid for it.