Pick Your Poison; Choosing a Disease Modifying Drug for Multiple Sclerosis
I was diagnosed with Relapsing Remitting Multiple Sclerosis in January of 2018. Yup… not even 2 months ago. I, like you perhaps, knew there was something quite wrong and despite having the acronym MS rattling around in my head for the past year or so, the diagnosis, the finality of the words said aloud, still shocked me to the core. So naturally, I did what we all do… I jumped on the double-edged sword of Google. Wow! What the hell was I thinking? Did I learn a whole lot about MS? Yes, I sure did. Did I read a whole lot more that I didn’t want to know? Yes again, is most certainly did.
Google and I have a love-hate relationship
I cannot answer the question of how to absorb being told that you have a condition of which has more possibilities of symptoms and outcomes than a fortune cookie and more unanswered questions than centipedes have legs. Accepting that I cannot get many clear answers is coming slowly and rather painfully, but now, thanks to a few MS Facebook support groups, I am a MS Warrior! I even might get the tattoo to prove it 😉
Accepting the unknown is not my strong suit.
Regardless of my current inability to fully wrap my head around this insane new adventure I have been unwillingly enrolled in (I feel like Frodo Baggins, without the ability to destroy my ring), I am reading, learning, and coping (sort of). I have been told that there is no magic pill to fix the damage that has been done but I do have options to prevent further impairment…for now.
Disease Modifying Treatments or DMT’s/DMD’s.
Not a cure, not a guarantee, not a one-size-fits-all, but a chance to slow the progression of the disease. My first reaction was BRING IT ON! Then I read the potential side effects… liver failure… fatal brain inflammation… injection site reactions. Wow! Yet another beautifully brutal double-edged sword! (I’m starting a freaking collection).
I have to say that I am fortunate. I am still in the stage where I don’t have to jump right to the big guns, the MS blasting cannons like Ocrevus, Mavenclad, Lemtrada and Tysabri injections. I have options like Copaxone, Plegridy, Rebif, avonex, Tecfidera and Aubagio. Yup, they are as difficult to comprehend as they are to say. But, hey, at least I have choices whether they suck sh*t or not. Now I am reading things like…” combination of four amino acids that chemically resemble a component of myelin” and “A permanent depression under the skin at the injection site may also occur, due to a destruction of fat tissue (lipoatrophy) at that site. Rash and hives, headache and anxiety can also occur” or the really fun ones like “only compound for the treatment of MS known to activate the Nrf2 pathway, a central mechanism of cellular defense” and “Healthcare professionals must monitor people on Tecfidera for any new sign or symptom that may be suggestive of PML (A potentially fatal brain inflammation). Complete blood counts, including lymphocyte counts, should be obtained prior to treatment with TECFIDERA, then every 6 to 12 months and as clinically indicated “(MS Society of Canada, 2018).
WTF! A person really needs a medical degree to understand this sh*t!
So, here I am picking my poison.
Maybe I am a wimp, or mentally deranged masochist, but I am opting for Copaxone; daily sub-cutaneous injections with risk of rashes, chest pains and itching versus the possibly liver destroying, hair-shedding, crippling nausea-producing pills each day or the possibly brain infection-causing medication infusions.
Someone will call me… mail me my life-saving kit… a nurse will come… I will be supported… it might not work… I might need to try a different med… and another, and another.
I am a MS warrior. Didn’t ask to sign up, but here I am. I will fight the good fight as warriors do!
Follow My Journey and Reality with Multiple Sclerosis. Maybe you will learn something, maybe you will laugh or find solace in my words. Share your story of picking your poison!
Don’t forget to check out my first novel in the 3-part series “When I Died”, a young adult/fantasy story with angels sure to captivate your heart!
— MS Society of Canada (2018) Disease-modifying therapies. Retrieved from: https://mssociety.ca/managing-ms/treatments/medications/disease-modifying-therapies-dmts