Treatment

Disease Modifying Therapy

There is no cure for Multiple Sclerosis, however, there are 15 different treatment options (often referred to as disease modifying therapies or DMT) that work to try to slow and stop disease progression. 

Currently, since my disease was caught so early, I could easily forget that I have MS. However, my treatment isn’t as easy as swallowing a pill or two. I do have to give myself injections, which serve as a constant reminder that I have MS. 

I am learning more and more about MS myself as time goes on and when I was first diagnosed I was sort of encouraged by the fact that there were 15 different disease modifying therapies. Well, what I am learning is that I don’t truly have 15 options right now. There are first-line, second-line, and third-line treatments that target the disease at different stages. Since mine was caught very early and my disease is not too aggressive, I fall into the first-line treatment category. This gives me 5 options, 4 of which are all injections, 3 of the injections you inject into your fatty skin and 1 injection is into the muscle. The 5th treatment is a daily pill, but it is thought to treat the disease differently than the injection medications and it is hard on your liver.

Glatiramer Acetate Injections

Currently, I am taking Glatiramer Acetate (also known as Copaxone) injections. I do three injections a week, Monday, Wednesday, and Friday. I rotate the injection sites around my legs, stomach, back, and butt. I chose to opt-out of the arms (heard it hurts really bad). Plus, I get these massive welts/bruises a day or two after my injections and I don’t really want people asking me what happened to my arms all the time. It is easier to hide the other injection sites if I need to. The goal is to inject this medication into the fatty areas of the body (I am finding this challenging and potentially why I am getting bruises since I don’t have a whole lot of body fat). 

One thing I have recently learned? A lot of the treatments, they are not 100% sure how or why the medications work. They believe that Glatiramer Acetate modifies the immune system’s response against myelin damaging T-cells that target and attack the myelin sheath around your nerves. Essentially, the medication is supposed to block those damaging cells and make sure your myelin stays intact. 

Side Effects 

You know when you watch TV and certain commercials come on the TV for certain drugs and they start listing all of the side effects? Ever notice how some of the side effects sound worse than the thing the medication is supposed to be treating? Never did I think I would be faced with medication options that have some terrible side effects. 

As far as Glatiramer Acetate’s possible side effects, I am certainly noticing the most common side effects (redness, swelling, lump under the skin at the injection site, and rash), but these usually go away after a few days. There are a few possible side effects that I hope to never experience. One is that sometimes people have a short-term reaction right after injections with chest tightness, heart palpitations, anxiety, and trouble breathing. I have heard that this sometimes happens months or years after taking the injections and may only happen once, but it doesn’t sound pleasant. Probably the “worst” side effect of the medication I am taking is that it could cause a permanent indentation under my skin called lipoatrophy. The hope is that by rotating the injection sites that this won’t happen. There is nothing you can do to necessarily prevent this from happening. 

So, I guess the trade-off is potentially lumpy skin or potentially losing my ability to see or walk. I think I will take the risk of being lumpy in hopes that the medication is doing its job and that I can save some of my myelin and not have permanent damage to my nerves.

Why Not Take The Pill Option?

If you are curious about how I chose the treatment option that I did, I really didn’t have a ton of options. Glatiramer Acetate is the only treatment option that is considered safe while trying to conceive and pregnant. We are hoping to add to our family soon. 

While the pill option might also be something to consider in a few years (assuming I am still in the first-line of treatment), I have to consider the pros and cons. The pill option for first-line treatment is called Aubagio and the most common side effects when taking this medication include headache, diarrhea, nausea, hair thinning or loss, and abnormal liver test results. Diarrhea is the top and most common side effect. Once again, this medication isn’t fully known how it works, but they believe this medication targets/blocks your overactive immune cells that start attacking your body during flare-ups. So, the treatment itself works a bit different than the current treatment I am taking.

Treatment Cost

I am incredibly fortunate to receive insurance that covers the majority of my treatment expense. I do not take that for granted. When my neurologist first started discussing treatment options with me, he mentioned the price tag of Glatiramer Acetate (Copaxone) was $100,000 a year. My jaw about dropped to the floor. He then casually said, “Oh, well you have insurance, right? That should cover it and if it doesn’t there are always companies that want you to be on their drugs so they will sponsor you.” I don’t know how true or easy this is for other patients with MS to have a low out-of-pocket expense, but treatments are not affordable without help. The most current information available is 2 years old. So, you can only imagine how prices have increased in the past two years based on historical trends. 

Patient Portrayal

Have you ever noticed how drug companies have stock photos of “patients” that are supposedly using their drugs?

These images are to sell you on choosing their drug for your needs in hopes that you will look and feel like the patients in the stock images. First of all, the chances of the people in the stock images using these treatments are slim. Secondly, how can you tell if the treatment is working? These patients don’t look like they have any of the common side effects. If these patients were experiencing nausea and diarrhea would they be smiling like this? If you were having diarrhea, would you be out in the woods? I don’t know about you, but I might require staying close to a bathroom. I am not so sure we should be trying to advertise these treatments to patients, but rather trying to provide the best options for each individual to help their disease.

Just something to think about.

Ask Me

If you ever have any questions about my treatment or how things are going, feel free to ask. I am happy to share what I know and how I am doing. As far as if my treatment is working? I don’t know that yet. I won’t know that until either I have a relapse or I have my yearly MRI that shows whether or not I have any new lesions. Prayers are always appreciated!