In terms of healthcare and medicine, oral medications for MS are still considered to be in their infancy. Coming onto the market just five years ago, oral medications for MS were saviors for many. They provided relief from the injections I talked about last week and they provided hope for research of the future. When I was first diagnosed, oral treatments seemed like they were still just a thought, a figment of medical imagination. But a few years later they hit the market, to the cheers and sighs of relief of many patients.
The first on the scene was Gilenya in 2010. Gilenya is believed to work by preventing certain types of white blood cells from crossing the blood-brain barrier. By doing so, it is believed that this reduces inflammation and damage to nerve cells. Gilenya seemed to be an answer to many MSers prayers, no more shots! But soon after many began taking it, the reports of side effects came out. This is not unusual, as with any drug there are often side effects. But with such a high profile drug, the side effects were high profile as well. One of the main side effects reported was heart issues within the first 24 hours of taking the first dose. And sadly in 2011 an individual experienced the worst side effect possible when they passed away within 24 hours of taking their first dose. This led to regulation changes including having an EEG prior to starting the medication and being monitored for 6 hours in the hospital after receiving a first dosage. Gilenya has also been known to cause vision, breathing or liver problems in some individuals which has prompted some groups to urge the FDA to use more restrictions on the medication. There’s always two sides to every coin though, and some people report wonderful relief from their symptoms and are able to do things they haven’t done in years.
Next to emerge was Aubagio in 2012. Aubagio is believed to work by inhibiting the function of specific immune cells that are believed to be present in MS. Patients were happy to have another oral option besides Gilenya, and it proved research was still marching forward. When taking Aubagio, one of the requirements is to have liver enzymes checked regularly as Aubagio could damage the liver. There are also other side effects as well; flushing, hair loss or hair thinning among others.
I was on Aubagio for about a year after Copaxone. I experienced major hair loss (at least I thought it was major) and I had a relapse while taking it as well. Clearly my body was telling me it was time to switch!
The last oral medication to make its way into the world was Tecfidera in 2013. Tecfidera was formally known as BG-12, it was formulated specifically for people with MS and has been used in Germany at higher doses to treat acute flare ups of psoriasis for years. It is thought to inhibit immune cells and may have specific antioxidant properties that might protect against damage in the brain and spinal cord. The main side effect reported by many individuals when taking Tecfidera is flushing. In 2014 an individual sadly passed away from PML, which prompted more stringent warning labels and JC Virus testing for patients taking Tecfidera.
As I mentioned, the only one of these medications I was on (so far) was Aubagio. I experienced what I would consider extreme hair loss (having to clean up the shower and floor every day) and a major relapse while taking it. As for the other possible side effects, I didn’t notice anything else. I loved the idea of being able to take an oral medication for MS instead of an injection, but my body had different plans for me. If I need to transition off of Tysabri in the future, I will definitely look to one of the other oral options before anything else.
Like all medications, these come with plenty of side effects. What is important to remember is to always weigh the risk versus benefit. What are tolerable side effects to you? To put it plainly, if the medication is working for you, what are you willing to put up with in order to get that benefit? If your medication makes you feel hot and makes your skin look like a tomato for an hour (flushing), but you’ve been relapse free for a year, which is more important? Or you’ve tested positive for the JC virus, what level of risk is ok with you? Those are definitely tough questions to answer, but with a little honesty and getting real with yourself, it can be done.
Husband’s 2 Cents
The one oral medication she tried, Aubagio, didn’t work. Her hair fell out and she had a relapse while taking it, which included ‘not subtle’ lesions in her brain. It may be an awesome thing for some people, but unfortunately not for her. I personally never noticed any difference in her hair, but I know she did. It was frustrating to watch her be frustrated.
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