On May 27, the FDA approved Zinbryta (daclizumab) for treatment of relapsing-remitting multiple sclerosis (RRMS). It can be prescribed to those who had inadequate response to two or more of the disease-modifying drugs. It’s a once a month self-injection.
I’m astounded how many medicines are available these days. I was diagnosed the week that Rebif became the fourth approved treatment for RRMS. It joined the ABC drugs (Avonex, Betaseron, and Copaxone) as the available options, so the new acronym was CRAB. Now there are 14 approved treatments. Still no cure, still no way to halt or reverse the progession, but at least there are more treatment options for RRMS.
Zinbryta is a “black box” drug, which calls out serious or life-threatening side effects – in this case, possible liver damage. Guess what? All of the MS drugs have liver damage listed as a possible side effect. That’s why you’re having regular blood tests, to make sure your liver’s still OK.
You’re not supposed to take any of these while pregnant or breastfeeding. When I decided to have my boys, I had to take a break until I switched the younger one to the bottle.
Each MS patient has to work with their neurologist to decide whether to take a disease-modifying drug, and which one to take. You’ll also need to work together to figure out whether you need to change drugs. I had to make that decision with my doctors multiple times. Here’s my experience (so far) with the drugs:
Avonex (interferon beta-1a) – This is the first one I chose. When I was diagnosed, I only had the ABC options, so I based my decision on dose frequency. I stayed with it until I took my baby break.
- Pro: I only had to take the medicine once a week.
- Con: That is one big-ass needle. Every week, I swore at that thick, long needle before jamming it into my leg. When it was time to have the arm injection, my husband would do it for me since I couldn’t get a proper angle to inject it into my own bicep. I took Tylenol with each injection to cut down on the flu-like side effects, but I still felt like crap for about a day. I’d usually take the injection at night so I could sleep through the worst of it.
Rebif (interferon beta-1a) was my next drug, when the neurologist thought other drugs would help me more than Avonex.
- Pro: I went from the largest needle to the smallest one. Instead of swearing at a needle once a week, I got pinched three times a week. I was able to reach all of the shot locations on my own, so I didn’t need anyone else’s help.
I was trained on taking the shots by a home nurse with both Avonex and Rebif. I had my sister and my husband on hand for the Rebif training in case I needed their help. For Rebif, the nurse had me practice loading the self-injector and stabbed a squishy ball for a few times before I got to give myself that first shot. When I took the shot, I laughed and said, “I’ve had mosquito bites that hurt more than that!” When J was little, he started asking me a lot of questions while I was getting ready for my shot. Then he asked me if it hurt, and I replied, “I took it while we’ve been talking. Did I look like I was hurt?” At first, he thought I was kidding, and he didn’t believe me until I showed him the injector.
- Con: I looked like a diseased leopard. Every time I took a shot, I got a bruise, and it took awhile for those bruises to go away. I made sure my midriff was covered at all times, because I was worried people might think I was being abused.
Tysabri (natalizumab) – My next drug was a monthly IV called Tysabri. Most of the people on Tysabri felt great and handled the drug well. The IV took about an hour, and then the nurses kept you around for another hour to make sure you felt all right.
- Pro: My infusion center included heated massage recliners. I could watch TV, get wireless on my laptop, eat, read, or even nap. Once a month, I had to take a break from my crazy life for a couple of hours.
- Con: I had to schedule and take a break from my crazy life for a couple of hours each month. At times, those breaks were not at all convenient for my job or family, but they happened anyway.
Another big con? The risk of developing PML (progressive multifocal leukoencephalopathy), a disease that causes death, or if you’re lucky, brain damage. You’re tested to see if you carry the JC Virus (lots of people do). Research showed that after taking Tysabri for 2 years, your risk of getting PML goes up. After two years, I got tested again to see whether I had enough virus in my system to put me at greater risk, and yes I did.
So my doctor offered me two pill options – Gilenya (fingolimod) and Tecfidera (dimethyl fumarate). While we talked about each choice, it seemed like a coin toss until we got to one key difference. My neurologist recommended taking an aspirin with each dose of Techfidera, and I stopped him immediately. I can’t take aspirin. I’ve take blood thinners ever since I had a life-threatening blood clot in my leg, so that I don’t get another one. Gilenya was the right option for me.
Gilenya – I’m currently taking it without any problems. I had to wait three months after stopping Tysabri to get it completely out of my system before I could start Gilenya. When I took the first dose, I was monitored in a clinic to make sure my heart rate didn’t dangerously slow down. I brought some books and packed a lunch so that I could pass the time. Every half hour, they would check my blood pressure – first while I sat, then while I was standing – to make sure it wasn’t too low. I had one low reading early on, but I was fine when I the 6-hour observation period was done.
- Pro – No shots! Take a pill once a day. That’s it. I have MRI’s every year, and my neurologist thinks the Gilenya is working well for me based on the MRI results.
- Con – You have to get Gilenya through a specialty mail pharmacy, and there’s bureaucracy involved. You have to get pre-approved by insurance, and if your insurance changes, you have to go through the whole process again. Novartis, the maker of Gilenya, has a program which will help you with the insurance and offers emergency doses if you may run out before the specialty deliveries are straightened out.
And the biggest con of all? $$$$$ I still get the shakes when I see the cost of each drug. Fortunately, private insurance foots most of the bill after you go through the pre-approval process. The drug companies also have programs in place to help cover some or all of the costs not covered by insurance. Currently, I don’t pay anything for Gilenya, since the program covers my copay.
So that’s what I’ve gone through. I suppose if Gilenya stops working well for me, then I may be looking at that new option. Who knows, there could be other options approved by that time. We’ll see.
