Exactly 1 week after my diagnosis, I went back to my neurologist and this time, I brought my whole family. I thought it would be a good idea for my family to hear what the neurologist told me the week before about my diagnosis—especially since I blacked out the first time we discussed it.
In addition to re-explaining my diagnosis and prognosis, during this appointment, my neurologist introduced me to the various treatment options available to me. But before we got into the nitty gritty details surrounding the medications, he told me the following story. He really likes to tell me this story whenever it seems like I am getting upset about having MS. (As a side note, I don’t get as upset now, and I can tell people I have MS without busting out in tears midsentence. So, things do get better.)
Anyways, this is the story he always tells me. His colleagues talk to each other about how 15 years or so ago they used to have to have very large waiting rooms in their offices because everyone had wheelchairs due to the progression of their MS. However, if you look around now, the waiting rooms aren’t as large, and this is because there have been so many advancements in how MS is treated. Now most people never end up in wheelchairs, or if they do, it is far far later in life.
Now, back to the various medications that currently exist to treat MS and that will, hopefully, keep me out of a wheelchair for a very very very long time. As a quick caveat to my below explanation and opinions regarding the various treatments, it should be noted that I have been specifically diagnosed with relapsing-remitting MS, so the medications listed are geared towards that type of MS.
- Injectable Medications (Beta Interferons)
- Avonenx
- Betaseron
- Copaxone
- Extavia
- Glatiramer Acetate Injection
- Glatopia
- Pledgridy
- Rebif
- Oral Medications
- Tecfidera
- Gilenya
- Aubagio
- Infused Medications
- Ocrevus
- Tysabri
- Lemtrada
- Novantrone
It is my understanding that this is a rather large list of treatment options, and not all of these were available even 3 years ago. Note that I didn’t actually consider all of these medication options myself. My neurologist did not present all of these medications as options because some of these medications are ones that you try after others stop or don’t work and some of these medications are too risky and harsh to take if you have not had children yet but plan to (which is me).
From what I have been told, the traditional way of treating MS is through injectable medications (beta interferons); these medications have the purpose of reducing the frequency and severity of your individualized MS symptoms. One downfall of these medications is that they don’t necessarily limit the actual progression of MS, so lesions can still develop throughout your body, which is not ideal. These medications get injected underneath the skin, and they need to be injected in different spots underneath the skin each time because otherwise you can get a rash. There are little maps you can buy so you can keep track of where you last injected your thigh, for example, so that you do not inject that same place for a little while. First and foremost, the idea of having to inject myself with a needle immediately made me cry. Additionally, before you even get to the point of injecting yourself, you have to mix the medications together. So, not only do you need to stab yourself with a needle, but you also need to do a bunch of prep work. I was not really on board for this. Also, these medications require blood tests to monitor your liver enzymes because liver damage is a possible side effect. Furthermore, if you use interferons for an extended amount of time (which is the goal since there is no cure for MS), you can develop certain neutralizing antibodies in your body that cause the medication to not be as effective at reducing symptoms.
Then, about 10 years ago, drug manufacturers came out with oral medications to treat MS, and I cannot even express how grateful I am for this advancement. For me, oral medications are something that I am used to, and something that does not really hinder my everyday life and routine. However, the oral medications, Aubagio and Gilenya, weren’t really up for consideration, because they can cause complications surrounding pregnancy. Since I am of child rearing age and would like to have children in my early to mid-thirties, my neurologist thought it was a good idea to not really entertain these medications.
Fortunately, the oral medication, Tecfidara, was presented as a viable option. As a disclaimer, I have been taking Tecfidera for almost a year, but let’s rewind for a minute, and I will explain why I chose Tecfidera. First, Tecfidera is known to help limit or prevent your immune system from attacking your myelin sheath, so it actually helps limit the progression of MS—instead of just limiting the symptoms. Additionally, it has anti-inflammatory properties, which MS is associated with inflammation, so having a medication that not only helps limit the progression of MS but that also lessens the inflammation it causes sounds like a win-win. Furthermore, this medication is known to be very effective in individuals who have relapsing-remitting MS, and all you have to do is take one pill twice a day (in the morning with breakfast or a snack and then at night with dinner). Additionally, the side effects associated with Tecfidera are not as severe as with the other medications. The most common ones are flushing, nausea and stomach pains, and these side effects are known to subside after your first month of taking the medications. Also, I didn’t know what flushing was when I first was introduced to this medication, but it is basically what happens when women go through menopause (i.e. hot flashes). One thing to watch with Tecfidera is your white blood cell count, because if your white blood cell count becomes too low and you happen to have the JC virus (which is a silent non-harmful virus that about ½ the population has) you can be at risk of getting progressive multifocal leukoencephalopathy (PML). PML is a rare but potentially fatal viral infection of the brain that cannot really be treated. Luckily, there is only 1 known person who has gotten PML from taking Tecfidera. Additionally, it takes a long time for this to develop, so as long as you are having your white blood cell count checked every few months and addressing drops in your count, it is basically impossible to get this virus.
The last family of medications are the infusions, which are treatments provided through iv at a treatment center. These treatments are done less frequently than daily or even weekly, so they are rather enticing to those who don’t want to deal with treatment on a regular and frequent basis. Most of the infusion treatments are reserved for those who have not adequately responded to other MS treatments. I think this is because these treatments are stronger than the daily medications since you are getting, in some cases, 1 month, 6 months, or 1 years’ worth of medication all at one time, and some of the side effects associated with the infusions are pretty severe. Tysabri was my second choice form of treatment because treatment is on a monthly basis instead of a 6 month or 1 year basis, and the side effects are generally the same as those with Tecfidera.
All in all, there are many different treatment options for MS, and the type of treatment you choose is a very personal choice. For me, taking an oral medication works with my lifestyle, and at least for now, it is effective at preventing new lesions from popping up on my brain and spine with little to no side effects. My symptoms have not entirely gone away though, but generally, there’s no promise that any of the above medications can get rid of the symptoms you had when you started treatment. Luckily, I don’t have any new symptoms since starting this medication, but I am having another MRI done in two weeks to confirm the medication is still working, so I will report back then. Overall though, I do consider myself lucky to have been diagnosed with MS at a time when we do have such advanced treatments.
