Health Information

Don’t Flush!!

Have you checked your medicine cabinet recently? I was cleaning things out the other day and was stunned to see the shelves behind my bathroom mirror were crowded with bottles I hadn’t touched in years. There were antibiotics I didn’t finish because I had an allergic reaction, an unfinished nausea prescription from the time I had the flu, and pain meds from surgery a while ago. I even had a bottle of ibuprofen from before my mother passed away five years ago.

“Having a shelf full of old or expired medications in the home can be a significant safety risk to family, friends, or even pets,” says CSI Pharmacy Vice President of Clinical Services, Barry Buls, PharmD. 

People often forget why those medications were originally prescribed, or they simply grab the wrong bottle, which could be dangerous. Medications prescribed for one person may make another member of the family severely ill. The powerful pain meds prescribed for cancer patients, for example, could send another person to the hospital or even cause their death. That’s why Barry recommends that each member of the household store their medications in a separate space.

CSI Pharmacy’s Chief Pharmacy Officer, Jack Lemley, PharmD, reminds us that hanging onto those old narcotics that were prescribed after surgery can cause curious kids to get hooked on opioids. And while most medications lose effectiveness over time, some, like that tetracycline in the medicine cabinet, may become harmful if taken past the expiration date. 

“It’s just safer to keep only the medications that are on your current medication list in your home and in a safe place and out of the reach of children,” Barry says.

Getting rid of unwanted medications, however, is not as straightforward as dropping them into the trash. At one time, people were advised to flush old or unused medications down the sink or toilet. Now we know it can be harmful to the environment and even human health when pharmaceuticals end up in our waterways. They can even show up in our drinking water, because most wastewater treatment facilities are not equipped to remove these chemical substances.

So how can we safely get rid of unused or expired meds?

Take Back Programs

The best way to dispose of unwanted prescription or over-the-counter drugs is through a “Take Back” event or at a special drop-off site. Every year, the US Drug Enforcement Agency (DEA) sponsors National Prescription Drug Take Back events. At these times, public safety agencies across the country are available to collect tablets, capsules, patches, and other forms of prescription and over-the-counter drugs, which are then disposed of safely. Medications are accepted anonymously, and the program is free.

Throughout the rest of the year, unneeded medications can be dropped off at special disposal locations, including pharmacies, hospitals, and businesses. Many local police or fire departments also provide year-round drop boxes. Your pharmacy may even offer an on-site drop-off box, mail-back program, or other ways to safely dispose of unused meds.

Home Disposal

If you are unable to get to a Take Back event or drop-off location, many drugs can safely be disposed of at home. These include prescription and over-the-counter (OTC) pills, liquids, drops, patches, and creams. The US Food and Drug Administration (FDA) provides guidelines for how to so this:

  1. Remove the drugs from their original containers and mix them with something undesirable, like used coffee grounds, dirt, or cat litter. This makes the medicine less appealing to children and pets and unrecognizable to someone who might intentionally go through the trash looking for drugs.
  2. Put the mixture in something you can close (a re-sealable zipper storage bag, empty can, or other container) to prevent the drug from leaking or spilling out.
  3. Throw the container in the garbage.
  4. Before throwing away the packaging, scratch out all your personal information on the empty package to protect your identity and privacy.

Special Considerations

Some products, however, require special handling.

Inhaled medications, for example, used for asthma and other breathing conditions, come in aerosol containers that can be dangerous if punctured or thrown into a fire or incinerator. To properly dispose of these containers, whether they are left over, expired, or used up, the FDA recommends contacting your trash facility. These metal canisters should not be recycled.

Similarly, fentanyl patches, used for long-term pain management, require special handling. Even after one of these adhesive skin patches is used, a lot of this high-dose medication can remain. This can be especially dangerous if someone for whom this drug is not prescribed, especially children, touches the patch for even a short time. Fentanyl patches are one exception to the advice against flushing meds. In fact, the FDA specifically recommends promptly disposing of used fentanyl patches by folding them in half with the sticky sides together, then flushing them down a toilet.

The FDA highlights other exceptions to the no-flush rule for medications that have similar safety concerns. Their Flush List includes drugs such as those that are highly sought after for misuse and/or abuse and those that can cause death from even one dose if used inappropriately. They recommend checking the medication label or their online Flush List to see if this form of disposal is recommended.

The FDA acknowledges the environmental concerns about disposing of these and all medications through the sanitation system. The agency recommends flushing for these specific medications only as a last resort. And their 2017 study of the risks posed by such disposal shows there is negligible toxicity to the environment and human health.

Remember, do not flush your medicine unless it is on the Flush List.

CSI Pharmacy stories

Another Set of Trained Eyes

Dr. Ed O’Bryan isn’t one to sit around. In fact, he stands—dances, even—even when he’s working at his desk.

He practices as an ER doctor, teaches emergency medicine, started and serves on the board of trustees for two nonprofit organizations, and founded a number of health-related companies, several of which he still serves as a board member for. He has a long list of peer-reviewed publications and given countless talks, including a TEDx talk in Charleston. And he’s always looking for better ways to provide the absolute best healthcare for patients. 

In August, Ed arrived at CSI Pharmacy to serve as our first chief medical officer. 

“I’ve always had an entrepreneurial mindset,” says Ed, who in addition to achieving a medical degree from the Medical University of South Carolina also earned an MBA from the University of Tennessee.

As CSI Pharmacy grows, expanding services across the country and growing the number of therapies we now offer, Ed provides clinical oversight to ensure we continue to provide the best care for those who depend on these treatments. He works with pharmacists and nurses to monitor therapies and patient outcomes, and he coordinates communication with healthcare providers so they are continually informed about their patients’ progress.

“We work with complex diseases,” Ed says. “They’re difficult to treat, and every patient is different in how they respond. Adding that extra layer of clinical oversight, whether it’s for patient questions or challenges that our nurses may have, just makes us better and further sets us apart from other pharmacies.”

Among his priorities is developing a digital evaluation process to monitor the impact of treatment on both the patient’s condition and quality of life. Gathering this data over a period of time can help pharmacists and physicians understand what’s working best to improve patient outcomes. It may even add to the scientific understanding of diseases such as myasthenia gravis, myositis, chronic inflammatory demyelinating polyneuropathy (CIDP), primary immunodeficiency diseases, and other conditions we treat.

Ed also wants to create a physician advisory council for CSI Pharmacy. Having a relationship with a group of specialists and researchers will help us stay on the cutting edge of new and expanding therapies that can best serve our patient communities.

“We want to show that patient outcomes are better when they get their infusions at home versus going to a hospital setting,” Ed says. “Having an extra set of trained eyes on our patients will help to make sure that their complex and chronic diseases are being managed in the best way possible. This can really take us to the next level.”

When he’s not working, Ed enjoys hanging out with his wife, Claire, a nurse practitioner, and their daughters, Evy (age 7) and Tillie (age 5). And while surfing is one of his favorite pastimes, he doesn’t get to do this much since he moved from Charleston, South Carolina to Nashville, Tennessee.

“I just want patients to know that that I’m here to be a resource for them,” Ed says. “These disease states are so complex and challenging from a lot of different standpoints. I’m really excited to be an advocate for them.”

CSI Pharmacy stories

Becoming Family

When Roxanne Marlar was first approached with the offer to join a new specialty pharmacy in Texarkana, Texas, she declined. The job was providing infusion therapies to mostly adult patients in their home. But she was a neonatal intensive care nurse working with premature babies, and she loved her job. She was not interested in making a change. Ever.

But she reluctantly agreed to meet with pharmacist James Sheets for dinner at a restaurant near her home in Little Rock, Arkansas. She found him funny and quirky and maybe a little overly optimistic. He talked about his plans for the new company he and two partners were starting. They were going to grow from a small, local business to a nationwide pharmacy in the next few years. Didn’t she want to be in on the ground floor and be part of this success?  

“It just sounded crazy,” Roxanne says. “I had never heard of immunoglobulin therapy. How could I do this when I don’t even know what it is? So I looked it up and it sounded interesting, that you could send a nurse into a patient’s home to give them this drug. I didn’t even know that was an option in nursing. It piqued my interest, so I decided I would just try it out. If I didn’t like it, I could always go back to the NICU.”

So in May of 2016, she started out with two patients as the only full-time nurse, and the business actually did grow into that nationwide service James had predicted. Today, CSI Pharmacy serves nearly 650 patients in 46 states. Roxanne is now Vice President of Nursing, leading a team of 103 infusion nurses, a director of nursing, five regional supervisors, and several support staff. She also oversees dozens of agency nurses contracted in geographic areas where CSI Pharmacy doesn’t have a nurse on staff.

Roxanne has always been a people person, so the thing she loves about this work is being able to spend time with patients—a minimum of four or five hours for every monthly intravenous immune globulin (IVIG) infusion—and the chance to get to know them on a personal level.

“At CSI Pharmacy, every patient has a primary nurse who comes to do the infusion every time,” she says. “They start out as a stranger in the patient’s house, but that changes quickly. A relationship is built, and the nurse really becomes like family for the patient.”

As an administrator, however, Roxanne doesn’t get that special time with patients as much as she would like. Now she spends most of her time overseeing the nursing staff, making sure they have the resources they need, and making sure patients receive the highest quality care possible. Still, she fills in to infuse patients in her area when needed, because she knows how important it is to spend time with patients, even for administrators.

“Our supervisors usually continue as the primary nurse for at least one or two patients, so they are still in the field,” Roxanne says. “It’s always good to lay your hands on the patient so you remember that what you’re doing on the administrative side is still all about making a difference for patients.”

The relationship that develops with the patient and their caregivers is sometimes a surprise to the nurses Roxanne hires. The infusion world is very different from working in the hospital or other areas of nursing. It gives the nurse a lot more flexibility and autonomy and the chance to be with patients in a whole different way. When nurses come to CSI Pharmacy, they often say they want to take on just a few patients. Just like Roxanne did, it doesn’t take long, before they ask for more and say they want to do this full time.

“Home infusion has my heart,” Roxanne says. “Taking this job has been the best decision I ever made. I will never do anything else.”

CSI Pharmacy stories

Making Our Patients Feel at Home

If there’s one thing that CSI Pharmacy always wants to do better, it’s to help those who need our services feel more comfortable when they arrive on our doorstep.

“A patient’s first experience with a specialty pharmacy can be very confusing,” says Elizabeth Duruz, RPh. “Getting their treatment approved by the insurance plan and all of the steps that need to take place before the patient even gets the medication, can cause a lot of anxiety.”

That’s why Elizabeth is here. She is a Certified Specialty Pharmacist (CSP), an Immunoglobulin Certified Pharmacist (IgCP), and she was recently hired to serve as Clinical Programs Manager at CSI Pharmacy. Together with our Patient Care Coordinators and Patient Advocates, Elizabeth will welcome new patients to our service, educate them about their therapy, answer their questions, and facilitate the preapproval process.

Elizabeth has been a registered pharmacist for twenty-two years and worked in specialty infusion pharmacy services since 2009. Prior to joining CSI Pharmacy, she was part of a large corporation where her work kept her at a distance from the people she served. That’s why she’s especially happy to take on this role at CSI Pharmacy where she can once again develop the kind of personal connections with patients that make her job so rewarding.

One of her major goals will be to make patients a partner in their own care. She will work together with patients and caregivers to understand their goals for treatment, track the effectiveness of their care, and adjust the treatment plan to optimize their therapy.

“Intravenous immune globulin (IVIG) can be uncomfortable for some patients,” Elizabeth says. “A lot of patients just don’t know there are options. Maybe we can slow down the infusion, for example, or spread it out over more than one day. We don’t want the treatment to be a bigger burden than the condition.”

For Elizabeth, it’s an important asset that she also lives with a rare autoimmune condition called sarcoidosis. It’s an inflammatory disease that causes abnormal masses called granulomas to form in the lungs and other organs in the body. The granulomas often change the way the organs work, causing, for example, shortness of breath and cough.

“I really believe this gives me the ability to see things from a patient standpoint,” she says. “My disease causes extreme fatigue and pain, and my insurance has refused to pay for the specialty medication that was helping me. So I can definitely relate to these same challenges that many of our patients have.”

Elizabeth is a native of Ohio but has lived in Atlanta for nearly a decade where she works remotely. She is also a soccer mom, with two players in the family, a son who is 11 and a 21-year-old daughter. Their family also includes two rescue dogs.

“Because of my illness, I’ve had to stop hiking and the other active things that I liked to do,” Elizabeth says. “But I’ve taught myself how to crochet, I make note cards, and I like to work challenging jigsaw puzzles…things that don’t require a lot of energy to enjoy.”

“I feel really at home at CSI Pharmacy, and I have a very strong passion to make sure our patients do too,” Elizabeth says. “I take it very personally if someone can’t get the treatment they need. So it’s my number one priority to see what I can do to overcome whatever barriers they are encountering.”


Uninsured? Healthcare Help is Available

David didn’t have health insurance when he was diagnosed with diabetes recently. The shock of having to cope with a severe chronic condition was bad enough, but now he was faced with having to pay nearly $700 per month just for the medication to treat his disease. Along with this, the American Diabetes Association estimates the added annual expense of treating this chronic condition is almost $18,000. With a family income of less than $24,000 a year, there was no way David would be able to afford this condition.

Unfortunately, when he turned to the two health insurance options available for low-income individuals, he fell through the cracks. Medicaid would cover his wife, and the Children’s Health Insurance Program (CHIP) would cover his two young children. But the Medicaid program is administered by states, each of which has their own rules and eligibility criteria. In Texas, a man like David who is not disabled and is under the age of 65, does not qualify for benefits. He could get coverage through the Health Insurance Marketplace Exchange, but it would cost him more than $300/month. This too was unaffordable.

When you’re in a situation where you need life-saving therapy, but you can’t afford insurance coverage, there are a variety of resources available to help cover the costs. Sometimes we just need help finding them.

While these resources may not be available for all chronic disease conditions, especially those that are rare, you may be surprised how much help is out there if you know where to look.  

Confide in your healthcare provider. This will help providers understand your needs better so they can help you stay healthy. For example, they may be able to prescribe a generic treatment or an alternative drug that is less expensive. Some may also be able to provide resources and suggestions for other options. David’s doctor, for example, gave him drug samples that could tide him over until he found a more sustainable way to pay for treatment.

Look for manufacturer assistance programs. Many pharmaceutical companies have programs that can provide financial assistance for the uninsured and copay assistance for those with insurance who are still unable to afford their medication. You can find this information by doing an internet search for the company that makes your medication, the name of the medication, and the term “patient assistance” or “financial assistance.”  

When David explained his situation to the patient care coordinator at the company that makes his medication, he was able to apply for and receive his medication free for several months until he could find a long-term solution.

See if you qualify for Social Security disability. If your disease makes it impossible for you to work, consider this option. The process is not easy or quick, but if you are accepted for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), you will also qualify for Medicaid. The added good news about this program is Medicaid benefits will start retroactive to the date you applied for disability. Here’s the Social Security link.

Look for local resources. Local health departments and federally funded health clinics can help those with chronic conditions find medical care at little or no cost. The following directories can help you locate resources in your community:

Explore patient support groups. Nonprofit organizations exist for nearly every chronic disease. These groups can put you in touch with others who can provide support and real-world experience of living with your disease. Most also share evidence-based information and the latest research about how to live well with the condition. In addition, a number of these organizations also have an assistance fund to help those in financial need afford the care they need.

CSI Pharmacy’s website provides support group contact information for many of the patient communities that we serve.

For other conditions, do an internet search using terms that include the name of the disease and “support group.”

Look for help through charity organizations. A variety of nonprofit foundations provide financial assistance grants targeting specific conditions or medications. The following are organizations we are aware of that provide this sort of help. You may find others by searching for “financial assistance” and the name of your disease or medication.

  • Accessia Health (formerly known as Patient Services, Inc.) helps with insurance copays and premiums, ancillary costs of care, travel expenses, and infusion costs for a range of chronic and rare diseases. They also provide free legal help for those trying to navigate the confusing systems of disability and health insurance.
  • The Assistance Fund provides financial assistance for copayments, coinsurance, deductibles, and other health-related expenses for 80 specific disease communities. Be aware that this source will only support medications that are FDA-approved for the condition you have.
  • Healthwell Foundation provides financial assistance to help with prescription copays; health insurance premiums, deductibles, and coinsurance; pediatric treatment costs; and health-related travel costs. Their list of disease funds is limited, and they often exhaust available funds quickly, so you may need to keep checking to see if funds relevant to you are available.
  • National Organization for Rare Diseases (NORD) provides financial assistance to help pay for medications, insurance premiums and co-pays, diagnostic testing, and travel for clinical trials or consultation with disease specialists. The list of diseases with which they work is limited to specific rare diseases. They also have a list of resources that provide financial assistance beyond rare disease.
  • Patient Advocate Foundation provides qualified patients with financial assistance for co-pays and co-insurance for prescription drugs for those living with specific disease states. In some instances, assistance with insurance premiums and/or ancillary services associated with the disease also may be available. Individuals must have health insurance, have a confirmed diagnosis, live in the US, and meet certain income limits.

These resources are provided as a service to our patient communities. CSI Pharmacy does not certify or vouch for any of the organizations listed here nor do we benefit in any way from providing this information. If you choose to access these resources, please review the organization’s information carefully before committing to its services or benefits. 

Health Information

Feed Your Health Well

During the month of March, we recognize National Nutrition Month. It’s a time for everyone to become more informed about the value of developing healthy eating habits.

Because so many members of our patient communities live with autoimmune diseases, we are especially concerned about how certain foods promote inflammation in the body. Foods that are highly processed, such as high-salt ready-to-eat meals, sugary cereals, high-fat processed meats, and sodas made with high fructose corn syrup are among the products nutrition counselors caution against.

If you’ve thought about how the foods you eat might be affecting your health, this might be the month when you experiment with trying something new. You can use the following ideas as guidelines for making wise food choices.

  • Avoid processed and fast foods, including those with high fructose corn syrup, artificial ingredients, preservatives, and pesticides. Instead, opt for fresh food. Eat a variety of brightly colored fruits and vegetables and foods that don’t contain a long list of unpronounceable ingredients.
  • Reduce the number of foods made with refined white flour and sugar, especially bread, pasta, and most packaged snack foods. Instead, choose foods made with whole grains, such as brown rice, bulgur, and quinoa.
  • Try to eat less saturated fat by cutting back on animal products and foods made with palm kernel oil. This will help your heart as well as your immune system.
  • Use extra-virgin olive oil and expeller-pressed canola, sunflower, and safflower oils.
  • Experiment with adding avocados and nuts to your diet, especially walnuts, cashews, almonds, and nut butters made from these nuts.
  • Eat more vegetable protein, especially from beans and soy, and choose fish, cheese, and yogurt more often than you choose meat.
  • Avoid drinking soda and choose tea instead of coffee.
  • If you drink alcohol, red wine may be preferable.
  • And here’s the good news: dark chocolate (in moderation), can be a healthy choice! (Choose the kind with a minimum of 70% cocoa.)

If you take corticosteroids (prednisone, for example), especially in high doses and for long periods of time, you may develop side effects that have implications for what you eat.

  • Prednisone increases appetite. To avoid weight gain, try to avoid high-calorie foods. Eating frequent, small meals can help maintain steady blood sugar levels so you don’t feel hungry. Getting plenty of exercise will also help.
  • To reduce the risks of high blood pressure and fluid retention, try to keep your salt intake at less than 1,500 mg per day. You can do this by eating fresh rather than processed or canned foods and hiding the saltshaker.
  • If you take medication for high blood pressure, you may need to eat foods high in potassium, such as bananas, apricots, cantaloupe, baked potatoes, and tomatoes.
  • Prednisone can irritate the stomach, so it is important to take it with food, not on an empty stomach.
  • Diabetes is also a risk when taking steroids. To keep blood sugar levels within the normal range, avoid foods high in simple sugars, such as fruit juice and those gooey pastries, and keep carbohydrate intake to between 45 and 60mg per day.

It may not be possible to get all the nutrients you need to be healthy from your diet. That’s where eating specific foods or taking supplements may be useful. The following suggestions are recommended for those who have autoimmune diseases.

  • Bone health is a concern for those who take prednisone. That’s why it’s important to eat foods rich in calcium, such as milk, yogurt, cheese, leafy green vegetables (kale, bok choy), almonds, and broccoli. Calcium supplements may also be needed to minimize bone loss and osteoporosis.
  • Vitamin D is a hormone produced in the skin in response to sunlight. It is also important for bone health as well as controlling inflammation. Because most people do not (and probably should not) spend enough time in the sun, most people need to take Vitamin D as a supplement.
  • Folic acid (also called folate) is a B vitamin that is found in leafy green vegetables, such as spinach, kale, broccoli, and other foods. Because the drug methotrexate interferes with the way folic acid is used in the body, if you take this anti-inflammatory medication, you may need more folic acid than you can get from food. You may want to ask your doctor about folic acid supplements.
  • Omega-3 fatty acids, which are anti-inflammatory, and omega-6 fatty acids, which cause more inflammation, should be in balance in the body to keep us healthy. Most Americans, however, eat much more omega-6 (found in vegetable oils, safflower oils, meat, poultry, and eggs), which causes a more pro-inflammatory state. Eating more foods containing omega-3 fatty acids, such as salmon, mackerel, sardines, leafy green vegetables, flaxseed, canola oil, walnuts, and enriched eggs, can help bring this back into balance. Omega-3 supplements are also available.

Of course you should always avoid foods that you are allergic to. And as always, it’s important to discuss diet with your healthcare providers to be sure they know that you are concerned about this important lifestyle habit and can guide you in making the best choices.

Advocacy IG Therapy

Peace of Mind with PNS

Recently, we received word of a voluntary recall of a particular brand of immune globulin (IG). The manufacturer requested pharmacies to return all units of two specific lot numbers of the product because of reports of allergic-type reactions in patients who had been infused with these specific lots.

The hives, swelling, and skin redness that patients experienced quickly resolved when they were treated with antihistamines (Benadryl, for example), steroids, and Tylenol. Still, the manufacturer wanted to be sure others were not unduly affected by these uncomfortable symptoms caused by their intravenous IG infusions.

While news of a recall may alarm some patients, making them question the safety of their therapy, veteran IG users know that the rare recall of medications is usually not a cause for concern. In fact, the idea that the manufacturer is vigilant enough about their products to take this step voluntarily makes them feel more confident in their treatments.

Product recall or withdrawal is a common practice in industries across the country, including pharmaceuticals and medical devices. A product recall or withdrawal has several different levels; the highest is a Patient Level Recall, which is a request or warning to stop using a product. This directive can come from the Food and Drug Administration (FDA), which oversees drug safety. More often, however, the request comes voluntarily from the manufacturer, usually in response to some safety concern they’ve noticed.

“We get recall notices from both the FDA and manufacturers,” says Jack Lemley, Pharm.D., Chief Pharmacy Officer at CSI Pharmacy. “Any time we receive a recall alert, we review our electronic inventory to determine if we have ever purchased the affected lot numbers. If we have, we then check to see if any of it is still in stock and remove it.”

Still, there are times when a recalled product may be dispensed before pharmacists are aware of the recall. At CSI Pharmacy, if such a product has been shipped to a patient, pharmacists contact the person immediately and advise not to infuse the therapy, if appropriate to the level of the recall. If the patient has already infused the product, pharmacists will evaluate them for any adverse reactions. Patients are urged to notify their healthcare provider(s) of any potential adverse effects for their IG therapy, even if there is no known recall.

As a partner in their own healthcare, we strongly encourage patients to keep their own records. This should include the manufacturer of the product, the lot number (found on the side of the bottle or container), and the way it was administered (IV or subcutaneous). CSI Pharmacy provides patients with an infusion log used to record this information.

Patients can be proactive in finding out about IG product “events,” as recalls and withdrawals are called, by registering for the Patient Notification System (PNS). Through this free, confidential early warning system, patients can be made aware of a recall before they infuse or inject their therapy.

The PNS was developed by producers and distributors of plasma products and is led by the Plasma Protein Therapeutics Association (PPTA) in response to consumer requests. It provides registrants with automatic updates about plasma product withdrawals and recalls from all participating manufacturers.

To access the Patient Notification System, call 1-888-UPDATE-U (1-888-873-2838) or register online at You can choose the products with which you would like to receive notifications, as well as the method of notification: via telephone, fax, e-mail, or overnight letter. You will also receive a first-class letter by the US Postal Service when there are notifications.

While pharmacists do everything possible to ensure the safety of patients, there’s always a chance that a product may slip through. The Patient Notification System in one more way you can team up with your pharmacists to ensure your health and peace of mind.

Health Information IG Therapy

When Your IG Therapy Makes You Feel Worse

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.   


Patient Advocates are on Your Side

We know how hard it can be for those who live with chronic or rare diseases to cope with their health challenges. It can be even more overwhelming when you add on all the other questions about specialist care, health insurance coverage, finances, and so much more. A patient advocate can be a lifeline, helping you find the resources to get the care you need, so you can focus on getting well.

A patient advocate is a person who supports your healthcare journey by helping you work with healthcare providers, insurance companies, employers, case managers, lawyers, and others on issues related to your health. These knowledgeable and committed individuals can help resolve issues around access to care, medical billing disputes, and job discrimination related to your medical condition.

Patient advocates can examine your insurance plan and help you understand your coverage. They can also help you choose a new health insurance policy during open enrollment, work with providers to resolve your healthcare needs, and help you apply for disability.

At CSI Pharmacy, we take patient advocacy seriously, going beyond just working with the individuals for whom we provide therapies. We believe advocacy also extends to providing actionable information for patients and their families. One way we do this is by supporting and promoting the wider efforts of disease-based patient support groups throughout the country.

Our nurses, pharmacists, and patient advocates volunteer to speak at patient support groups, national conferences, and webinars. Through these talks, we educate patients and caregivers on issues such as navigating insurance, tailoring therapies to meet your unique needs, infusing specialty therapies in the home, understanding social security disability, and helping patients choose the best health insurance plan for them.

Another way we advocate for patient communities is by providing valuable resources on the CSI Pharmacy news page. We encourage you to subscribe to this page on our website, where you will receive ongoing information about treatments and wellness, patient stories, provider profiles, insurance, policy issues, and much more. You can sign up here.  

Our quarterly email newsletter also provides important news from the pharmacy as well as links to a broader range of news from around the rare disease community and a seasonal recipe too! You don’t need to be a CSI Pharmacy customer to sign up for the newsletter. And please follow CSI Pharmacy on Facebook, Twitter, and LinkedIn where we also post about issues of interest to the rare disease community.

Our patient advocates are always available for you, regardless of whether or not you are a patient of the pharmacy. To schedule a one-on-one consultation, just email us at [email protected].


Building a Myositis Team in Texas

When Salman Bhai, MD and his wife were looking around for a place to settle into their careers last year, they decided Dallas was where they wanted to be.

“We were looking for a place that would support us,” he says. “Both of our families are here. We’re originally from Dallas, so this has always been home.”

Along with coming home, Dr. Bhai wanted to bring to the area his expertise as a neuromuscular specialist and a myositis researcher. His goal is to build a regional multidisciplinary clinic that specializes in myositis care. Such centers exist in other areas of the country—Baltimore, Boston, Pittsburgh, Kansas City, for example—but they are notably lacking in the South.

In Texas, Dr. Bhai was given the opportunity to create this specialty care clinic and be part of vibrant clinical and scientific communities. He serves as the Director of the Neuromuscular Center at the Institute for Exercise and Environmental Medicine, a joint institute between the University of Texas Southwestern and Texas Health.

“We are developing a myositis center where patients don’t have to travel so far to get the care that they need and deserve,” he says. “It will also be multidisciplinary, so they don’t have to keep coming back and forth to see different specialists. We will have everyone in one place.”

Dr. Bhai was fascinated by neurology when he was in medical school. He found the nervous system to be especially interesting because of its complexity, and he knew there was a lot more to be learned about its function and impact on people’s lives. As a neurology resident, he gravitated toward patients with neuromuscular challenges and did clinical fellowships with some of the country’s most renowned myositis experts in Boston.

 “Myositis patients have muscle disease as well as systemic involvement,” he says. “I especially enjoy speaking with patients and trying to understand the issues they have, because we can make a big difference. It requires multimodal care, and it’s a long-term relationship. These patients don’t just need medication. They need a good doctor-patient-caregiver relationship to help them achieve the best outcomes.”

Dr. Bhai is also an Assistant Professor of Neurology at the University of Texas Southwestern Medical Center where he cares for patients with a range of autoimmune neuromuscular conditions, including myasthenia gravis, chronic inflammatory demyelinating polyneuropathy (CIDP), and Guillain-Barré syndrome (GBS).

The myositis center will also be a research institute. Dr. Bhai is collaborating with other researchers at UT Southwestern on projects to better understand all forms of the disease and to develop new therapies to treat them.

Already there is a biobank in place where muscle biopsies and other de-identified patient specimens can be stored for research. The center will also serve as a site for clinical trials—Dr. Bhai currently serves as site investigator for nine clinical trials—where those with myositis can participate in testing of new therapies and diagnostics.

And because exercise is such an important part of the treatment plan for those with myositis, once COVID restrictions are no longer a problem, Dr. Bhai wants to include an exercise program in the mix. His hope is this will be a place where patients can come together not just for an exercise class, but to meet others who have their disease, share their experiences, learn from each other, and serve as a support network.

Raising awareness of myositis among new medical practitioners and trainees is also a priority.

“These patients are rare. You don’t see them every day,” Dr. Bhai says. “My hope is when trainees join me in clinic, they will see more of these cases than they might otherwise. Whether they’re trying to learn how to perform muscle biopsies or exercise testing, or they want to see what myositis looks like in a patient, I want to help support that.”

Dr. Bhai’s own research stems from his personal interest in exercise.

“I think muscle is quite beautiful and complicated, but we treat it too simply,” he says. “We think of it only as something that allows us to move. But in fact, it communicates with the rest of the body. Muscle tissue releases factors that influence your brain, your gut, and other muscles. Because of these factors, we know that exercise improves quality of life, it improves overall muscle health, and it improves mental health. Most people should exercise, even those who have a muscle disease like myositis.”

Dr. Bhai’s current research involves understanding why people with myositis experience exercise intolerance and fatigue, even when their disease is well-controlled. He’s trying to understand the biology of muscles, especially the mitochondria (tiny structures in the cell that generate energy). And he’s exploring genetic markers in the blood to see how these markers released by muscle tissue are different in those with myositis and how that produces the symptoms they feel.

“My goal is to create a partnership with a broad team,” Dr. Bhai says. “Not just with practitioners but also with the patient, the family, the caregivers, their pets, their support team. Everyone. I really want to have a patient-centered approach that brings change to those who live with this disease. That’s when patients get the best care.”