Taking immunosuppressants: A balancing act for doctors, patients

[Omit patient name] began taking immunosuppressants in 1998 after receiving a lung transplant. His doctor put him on a typical starting regimen, a high dose of cyclosporine A, Imuran®, and prednisone to reduce inflammation and disrupt the production of white blood cells that would attack his new lung.

The risk of [omit name]’s body rejecting the new lung was highest immediately following his surgery, so his doctor told him not to leave the house for three months except to have checkups or to have his blood levels tested. 

“Because I was on such high doses of immunosuppression, there was not a lot left of my immune system,” [omit name] recalls. “Friends and family still pretty much knew that if they are sick, or if their kids are sick, they couldn’t visit.”

The balancing act begins

[Omit name]’s entry into immunosuppressants therapy would mark the beginning of lifelong precautions he must make to find the right doses and combinations of medicines to keep his new lung working. Ironically, because those medicines have so many side effects, [omit name] has to take even more pills to combat their side effects and treat his cystic fibrosis (CF)—the original cause of his lung failure.

[Omit name] pointed out that having CF and taking prednisone caused him to develop CF-related diabetes, a unique form of diabetes in CF patients.

“My disease really involves a progressive deterioration of the pancreas,” he said. “I just don’t produce as much insulin as I did when I was younger.”

[Omit name] takes insulin along with 34 other pills each day—a batch at 7 a.m., eight more at 7 p.m., and others with meals. For example, to prevent and treat infections, [omit name] takes Septra® and Sporanox®. Sporanox is an antifungal medicine to prevent the histoplasmosis fungal infection that once existed in [omit name] original lungs from returning. The histoplasmosis fungus lives in certain soils found in Missouri, and people become infected when they breathe in dust that contains the fungus.

“My doctor knows they’re (histoplasmosis) still around in this area, and they don’t want me to get that back,” [omit name] said. 

As for side effects, [omit name]’s have ranged from cosmetic changes, like his hair going from curly to straight, to kidney failure. Cyclosporine A, the immunosuppressant he was taking, is associated with renal injury in about 30 percent of patients who take it. 

Four years after his lung transplant, [omit name] needed a new kidney which he waited for while on dialysis. 

Following his transplant last year, [omit name]’s doctor switched out his cyclosporine for tacrolimus, another immunosuppressant with side effects spanning gastrointestinal problems to lymphoma. Tacrolimus raises [omit name]’s triglycerides, so he had to add niacin to his arsenal of medicines. At one point, [omit name] said his triglycerides were at a whopping 350 (150 is considered normal). The niacin reduces his cholesterol levels but also gives him “bad hot flashes” that cause him to turn bright red.

“I was at a Bible class at church, and one of the ladies sitting next to me said, ‘You don’t look so good. Do you feel all right?” {Omit name] recalled. “I said, ‘I’m on this medicine that gives me hot flashes.’ And all the ladies laughed and said, ‘Oh, well, now you know how it feels.’ ‘Yes, I do.’ I told her.”

Immunosuppression increases patients’ risk of skin cancer. [Omit name] had a basal cell carcinoma removed from his face earlier this year. It’s very important for him to be vigilant and see his dermatologist once a year. 

“That’s what I did in January,” [omit name] said. “My doctor looked me over and said, ‘That spot there. That does not look good to me.’ So, they took a biopsy and called me a week later and told me: ‘You’ve got skin cancer. Come in, and let’s remove it.’.”

[Omit name]’s doctor also prescribed Sirolimus®, a newer immunosuppressant drug, but it caused [omit name] to develop neutropenia, a blood disorder characterized by a plummeting white blood cell count. 

“That wasn’t good,” [omit name] recalled. “They want to suppress the immune system, but they don’t want it to be zero.” [omit name]’s doctor took him off that medicine quickly.

Today, [omit name] still has to be very careful about “picking up colds and infections,” he said.

“In large groups or people, at the movie theatre or church, I wear one of those yellow surgical masks to prevent getting any kind of airborne respiratory infection. I always carry around a bottle of Purel® hand cleaner that I use liberally.”

[omit name]’s wish for organ transplant recipients

If scientists could make a more specific drug that could protect some organs while leaving others available, it would be epic for the 26,000 (60% kidney; 23% liver; 13% heart/lung) patients who received transplants in the United States in need of ongoing chronic immunosuppression, including [omit name].

“That is a very difficult proposition, because individuals are different, and organs are different. What target do you go after? It’s not clear to me,” [omit name] said. “If the side effects were avoidable, that would be fantastic. The side effects are what’s really dangerous, particularly the toxicity that led to my kidney failure. Even though the drugs we have now are not perfect drugs, we do the best we can.”

Despite the many adverse drug reactions, close calls, and experiences of the weird over the past eight years, [omit name] has learned to go with the flow and take on a proactive pharmacovigilance to be able to give his doctor the information needed to weigh the risks and benefits of certain drugs.

“With good judgement, you talk to your doctor and come up with a plan. And if it doesn’t work, you can come up with something else. Immunosuppressants are good drugs, but like all the drugs we make, they have side effects. So, you have to be aware of the risks and benefits and balance them.”

The risks associated with the immunosuppressant medicines available today are worth it to [omit name], because the benefit they provide is life.

[omit name]’s immune system will always recognize that both his lung and kidney came from outside his body and if he ever stops taking his medicine, his immune system will “go into action” and destroy both organs.

Pfizer scientists are working to change this scenario.