Immunosuppressants or anti-rejection medications are medications any transplant recipient is familiar with. Let’s dive into what they do, how they are monitored, and their side effects.
Immunosuppressants or Anti-Rejection Medications Start Right Away
When I first went home from the hospital after my transplant, I was on reasonable dosages of two types of immunosuppressants. Mycophenolate/mycophenolic acid (or the brand name Myfortic) and tacrolimus (or the brand name Prograf). These are fairly common in several different types of transplants.
I know from speaking with other recipients, that some transplant centers add other medications. Some have their patients on low dose steroids (prednisone) in addition to their normal regimen.
Types of Immunosuppressants or Anti-Rejection Medications
There are different medications for different transplants. With that said, some of these other immunosuppressants might include azathioprine (Imuran), basiliximab (Simulect), belatacept (Nulojix), cyclosporine (Sandimmune, Neoral, Gengraf), and sirolimus (Rapamune).
Side Effects
Each medication has its own special mix of side effects. You should discuss any side effects you experience with your doctor or pharmacist. Most are mild but there are some more severe ones as well.
Some Things I’ve Experienced
Nobody can tell you what side effects you’ll have (if any) because each person is going to be different. However, let me boil down some of the things I experience or have experienced in the past.
The most significant side effect for me is tremors. Holy smokes you guys! I get tremors like nobody’s business from tacrolimus. They are so bad sometimes that I have a hard time writing legibly. Thank goodness for the internet! If blog writing meant you had to read my handwriting I’d be in trouble!
Seriously. I could have a job as the bartender for James Bond because I have that “shaken not stirred” thing down pat!
The tremors vary from day to day, but I am asked about them a lot. “Are you nervous or something?” “Geez, are you OK?” Then there are the people who just stare at me.
I have also had issues in the past with mycophenolate raising my white blood cells too high. And both medications tend to make me nauseous.
What If They Are Unbearable?
The good news is, in most cases, there are other options for you. Say one medication is truly not working. Maybe it is causing side effects so severe that it’s difficult to carry on with your day-to-day tasks. You could adjust when you take the medications to help you. For example, let’s say you are an artist and you do the bulk of your work between 6 and 10 a.m. Maybe you take your meds at 10 a.m. and 10 p.m. so that your tremors are at their lowest when you are working.
The Right Cocktail
Of course, your team will adjust your meds based on your blood work. They are looking to find the oh-so-perfect cocktail of medications to accomplish a couple of things. They want to keep your immune system suppressed enough that you aren’t causing damage to your organ. However, not so suppressed that you catch every virus and infection out there.
In an effort to find my perfect cocktail, there have been reductions in my immunosuppressants or anti-rejection medications in the past. At one point, my white blood cells were too high. Because of this, doctors stopped mycophenolate for about a year. Then, because my liver numbers were really good, my tacrolimus (or tac) was reduced to just half a milligram to keep my tremors in check.
As we age, gain weight, lose weight, and just live, our body’s chemistry is constantly changing. This means you’ll likely be adjusting your meds off and on your whole life. As of the time of this writing, I was back on 720 mg of mycophenolic acid and 2 mg of tac twice a day.
The Upside of Immunosuppressants or Anti-Rejection Medications
It can be easy to get wrapped up in the negative side effects. Speaking of which, why can’t there be positive side effects? “This drug may cause spontaneous fits of overwhelming joy, no calories in anything super yummy, and a mailbox full of cash.” Ah, but that’s not how life works, right?
As I was saying, it can be easy to get wrapped up in the negative side effects. However, aren’t tremors and some mild nausea a small price to pay to be able to spend time with your family and friends? Watch your kids grow up? Meet your grandkids? Or maybe just enjoy a beautiful day outside? I think so. I’ll make that trade every time.
