Next Disease Modifying Therapy

The Pros and Cons of Disease-Modifying Therapies

Meeting with a Neurologist

There are so many things that are different about a specialty doctor for an autoimmune disease that you don’t necessarily realize until you have one. For instance, it feels like every time I have an appointment they block out about 2 hours for my appointments. They know that these appointments often can take anywhere from 1-2 hours. I had never experienced this in my life before having my MS diagnosis. Typically it feels like doctors are always in a hurry and want you in and out and at most the appointments are 30 minutes. In fact, I have had doctors that are trying to leave the room and I am trying to squeeze in one last question. But, they have never rushed me in and out of my neurologist’s office. I remember early on asking how long to plan for the appointment and their response was, “the appointment is however long it needs to be…” “huh?” “The doctor wants to provide you with as much time so you can ask questions and you can discuss treatment options and your health.” Wow, that is amazing. All that to say, I am still caught off guard when I leave my neurologist’s office and the appointment ends up being an hour and a half. 

Discussing Treatment Options

Since I can no longer take Copaxone I went and discussed with my neuro my next treatment options. We discussed a few different possibilities. There are so many factors to consider. Disease progression, side effects, lifestyle, long-term planning, efficacy of the drug, etc. We mostly were discussing two different options for my next treatment. Let me quickly remind you that all of these drugs are a “pick your poison” type of situation. They all have potentially dangerous side effects, but overall they are typically safe. 

The first treatment we discussed is called Zeposia, which is in the same family as Gilenya, which is more widely known. I realize these names may not mean much to an average person. Zeposia is one pill a day and has a higher efficacy, but not the “top dog” sort of speak. However, it really weakens your immune system and one of the long-term negative side effects is it increases your likelihood of developing cancer. This one would mean I would probably catch any and every cold I am exposed to. 

The second treatment we discussed was Vumerity. Vumerity is in the same family as Tecfidera, also more widely known and used. Vumerity is newer, and incredibly similar to Tecfidera, but it is supposed to help prevent or lessen some of the side effects like upset stomach and flushing. The most dangerous and very rare potential side effect of Vumerity/Tecfidera is PML, a progressive multifocal leukoencephalopathy, which is a rare brain infection that can lead to death or severe disability over a period of weeks or months. But, not to worry, four of the highest efficacy MS drugs have this same side effect. In fact, Gilenya falls on the list too. 

We briefly discussed Ocrevus, which may be the only drug you have ever actually heard of because it is advertised on TV. Ocrevus is one of the top treatments for Multiple Sclerosis. However, if you choose the top, and it doesn’t work, or your body rejects it, you really don’t have many places to go from there. So, it made sense to stay on a lower efficacy since my MS is stable and doesn’t appear to need the highest level yet.

Next Up: Vumerity

After a long discussion, I decided to go with Vumerity as my next step. Vumerity, is two pills twice a day. I was warned about the flushing and upset stomach, but you never really know quite what to expect until it happens. I also assumed the flushing would be pretty immediate, but it turns out it can take several hours and feel like it is happening out of nowhere. I haven’t had too many upset stomachs, but I have had plenty of flushing and some heartburn. The flushing is really weird, it comes up out of nowhere and the best way to describe it is like a really bad sunburn. My face, chest, arms, and body turn bright red and blotchy. It feels a bit tingly and itchy. It usually subsides within an hour. And, I have only had problems after my morning dose so far. But, if you are ever with me and I turn bright red, or I look like I am sunburnt, chances are I am not (but, I guess I always could be). It is also tricky because you have to figure out the right balance of food to take the medication with. You have to take it with food, however, you cannot exceed 700 calories or 30 g of fat (which in general is a lot for one meal lol, but be careful if you ever decide to go out for a burger and fries). After lots of research and message board reading, it sounds like each person is slightly different, but there are some meals and tricks to reducing flushing. In general, you want to make sure that your meal has a good amount of protein and some fat (just not too much fat). I personally am finding that eggs are one of the best solutions. A piece of toast with peanut butter works pretty well too. Vumerity can decrease your white blood cell count, so I will have to get blood tests every so often to make sure that everything looks okay.

So Far, So Good

Overall, so far, so good. I am four weeks in and up to taking all four pills (I had to taper onto it). Taking pills twice a day is quite a bit easier than injections. And, now at least I don’t have massive welts all over my body. Although, the tradeoff is sometimes turning bright red. I would love continued prayers that my body can handle this drug long-term and that I don’t have any of the really negative side effects. Prayers that this drug would continue to keep my MS stable and my brain would be healthy and safe. I am thankful that there are so many options and while they all are scary and less than ideal, I am thankful that they are proven to decrease the risk of relapse. 

Loving this sunshine!

I will keep you posted with more MS updates soon!



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3 responses to “The Pros and Cons of Disease-Modifying Therapies”

  1. Debbie Avatar

    Rachel, I take Tecfidera. To avoid flushing, I take a 81 mg. aspirin about 15 mins. before and never on a empty stomach. Wishing you the best always❣️

  2. Diane Losek Avatar
    Diane Losek

    You are an inspiration for others and my personal hero❤️

    1. Rachel Avatar

      You are so sweet. Love you.