What are YOU on?
What drug are YOU on? This is my most frequently asked question when I’m at work and a patient discovers that I also have MS. Usually they usher me into a quiet corner, where no lurking neurologist could potentially overhear us. They ask me in whispered tones and look at me wide eyed, like they’re on the cusp of a major medical breakthrough. I guess they figure I have my finger on the pulse (so to speak), so whatever I’m on must be THE stuff to be on. Right? Welll…
If you would allow me to wear my nurse hat for a minute and do a “quick” run down of medication options
#1. Copaxone. We love Copaxone because it’s relatively safe, has few systemic side effects, and is ideal for young women because it isn’t harmful if they become pregnant while taking it. The major complaints we receive are injection site reactions like redness, swelling, burning, and itching and lets face it, on the spectrum of MS medication side effects that’s pretty minor. It’s a once daily injection, and just recently the new 3x per week formulation has hit the market. Hopefully only injecting three times a week will give our patients a better quality of life.
#2. Interferon Injectables. These include Avonex, Betaseron, Rebif, and Extavia. These have flu like side effects after injection, as well as other more serious side effects such as increased liver enzymes and a weakened immune system. A large portion of the MS population responds very well to interferon medications, but they require monitoring of bloodwork.
#3. Oral Medications. Aubaggio, Tecfidera, and Gilenya make up this newer class of medications. Aubaggio requires strict monitoring of liver function monthly. Tecfidera is associated with stomach upset and flushing. And Gilenya has been shown to slow heart rate and raise blood pressure, so is generally avoided in anyone with a history of heart disease.
#4. Infusions. Tysabri, Lemtrada, Cytoxan, and Rituxan are the four infusions we use. Tysabri is the most common, and it’s major side effect is increased risk of contracting PML or a brain infection. To minimize the risk we test your blood for something called the JCV virus often. Read more about JCV and PML here.
This is in no way is a complete list of every side effect of each medication. But the main point is that each drug comes with it’s own set of unique and special side effects, which is why treatment HAS to be individually tailored to meet the needs of the patient. No one drug is “better” or “worse”. Your doctor isn’t feeding you a line when they say “we need to find the drug that works for you.” It’s the frustrating, but honest truth! This is also why many doctors send patients home with brochures about treatment options and ask them to choose for themselves (not that I think this is the nicest approach). When it comes down to it all of these drugs treat MS, and their success rates (or efficacy) are fairly comparable. However, only the patient can make the call as to which side effects they are willing or not willing to accept.
So let me switch hats again…ok there we go, patient hat is back on.
I’ve changed medications twice since being diagnosed. I was on Copaxone, and had zero side effects from it so I was pretty happy. Also the pricetag is only (only!) $5,000 per month, compared to some other treatments that can run up towards $32,000 PER TREATMENT.
Just let that soak in for a minute…But anyway!
I was a happy customer but my MRI was telling a different story. I ended up having 3 relapses on Copaxone so, ultimately, I had to switch.
“Your medication is not working, you need to switch. Which drug do you want to try next, Rebif or Gilenya?”. Such a simple question, one I’ve discussed hundreds of times with hundreds of patients. It’s so different to BE the patient.
Suddenly the two parts of my brain start wrestling. The nurse in me knows I have to choose something else. I’m getting brain damage for heavens sake, Copaxone clearly isn’t working for me. But the patient in me thinks the long list of side effects associated with the other drugs sounds terrible. I wanted to stay on the safer drug. I was LITERALLY being asked to pick my poison. My mother finally had to sternly say that I didn’t have a choice, I had to pick one. I mean I’m an MS nurse, I already knew that…but at the same time I didn’t. So it came down to feeling like I had the flu 3 days a week, or risking cardiac side effects. Eenie meenie miney mo.
This decision took me days of agonizing, and I didn’t even have to do the research and look up the stats because I already knew them all. So I feel for every one of my patients in that position.
I ended up choosing Rebif but my body didn’t agree with the interferons so now I’m in the process of getting my insurance to approve Gilenya. I’ll let you guys know how that goes!
This is just one example of the many humbling moments I’ve had as a patient. I’m hoping these moments will make me into a strong nurse and nurse practitioner in the future. The ultimate reward would be to use my experiences to help someone else through their MS journey with a bit more ease!