Disease Modifying Therapy…

Disclaimer: I am not a healthcare professional and everything I write in this post is solely from my experience during my diagnosis and research for treatment options.  

“Disease-modifying therapies (DMTs) are treatments that can reduce the activity and progression of multiple sclerosis (MS). They can be useful for both people with relapsing-remitting MS (RMS) and relapses of progressive forms of MS. A relapse is the worsening of symptoms and/or the appearance of new ones, which last at least 24 hours and are separated from a previous relapse by at least one month.” Link   

Due to the placements of my lesions throughout my central nervous system, I was advised for a high efficacy therapy; however, my options were limited due to testing positive for JC virus which may cause PML upon taking certain medications.  

My options were Aubagio (Teriflunomide) or Ocrevus (ocrelizumab). Since the Neurologist I see is part of a research facility, I was recommended to participate in one of the studies that the practice was conducting to compare Aubagio with a BTK inhibitor study drug. The two studies at the time had different limitations and the deciding factor comes down to a personal preference. After consulting with my family and my PCP, I decided to go with one of the studies.  

All studies come with specific guidelines and these differ based on various components of the chemical ingredients, in my case one study was longer than the other, the bottom line was the length of the study because one study was about 200 weeks long and another 96 weeks, so I decided to go for the 96 week study out of which I have completed 41 weeks – almost half way there..   

I am enrolled in a Phase III, multicenter, randomized, parallel group, double-blind, double-dummy, active-controlled study of Evobrutinib with an active control Teriflunomide. The study has its pros and cons and limitations but at this time, as follows:  

Pros: 

  • Because it is a comparison, you are getting a newer and improved treatment for a disease before it is available to everyone. 
  • You are playing a more active role in your own health care. 
  • Researchers are providing you with medical care and more frequent health check-ups as part of your treatment. 
  • You may have the chance to help others get a better treatment for their health problems in the future. 
  • You may be able to get information about support groups and resources since.  

Cons:  

  • The new treatment may cause serious side effects or be uncomfortable. 
  • The new treatment may not work, or it may not be better than the standard treatment. 
  • You may NOT be part of the treatment group (or experimental group) that gets the new treatment—for example, a new drug or device. Instead, you may be part of the control group, which means you get the standard treatment or a no-treatment placebo. 
  • The clinical trial could inconvenience you. For example, medical appointments could take a lot of time. You might need to travel to the study site several times or stay in the hospital. 

Limitations:  

  • No red wine during study period (side note: I crave it sometimes but I can live without it). 
  • No bitter orange, grapefruit, or tropical fruit is allowed.  

It is important for patients to consider their options with their healthcare providers before making any decisions.  

I hope this post was somewhat helpful. Let me know if y’all have any questions!!