Friday, February 19, 2016
The Roller Coaster Ride of MS Medications
July 2001 is when I became a druggie. That is the summer I fell (literally) into the collective pool of drug users. And I did it big time. Go big or go home, right? I went straight for the needle. Beta Seron was my drug of choice. I learned the proper way to self-inject and NEVER shared needles with anyone. Of course, at the time I didn't know anyone else who took medication for multiple sclerosis and was just learning about my own personal alphabet disease. You know the ones: MS, MD, ADHD, the letters for Lou Gehrig disease... The needle sharing thing was not really a possibility as Biogen assured that the user's equipment was and is for singular use only.
At first the injections were not a whole lot of fun. it's not that I have an aversion to needles; scheduling the treatment is just not convenient. And, sure, needles are not that much fun. But I had to keep a positive attitude and I found pleasure in the little things. Like when the auto injector was introduced and I not longer had to manually prep my injection site, personally inflicting the pain of plunging the needle under my skin. Always fascinated with gadgets, I actually loved when the drug company amped up the design of the injector and made it visually attractive in new funky colors, complete with a color coordinated travel case. Hey, whatever works for ya.
Beta Seron and I remained friends for several years, but in 2012 I some how forgot to pick up my monthly prescription and conveniently forgot that I needed it. Two months later I realized that I felt SO much more energetic without my "fix" and decided to proclaim myself drug-free.
And then the annual neuro appointment rolled around and I was caught in my drug-less routine. I do not know of a neurologist out there who won't insist that we all must be "on" something. By this time several new treatments had been added to the big three (Beta Seron, Copaxone, and A) and my doctor was anxious to introduce me to the latest. I had to admit that I felt better wince my departure from Beta Seron, but my drop foot had worsened and I had to look at the big picture. I had a son, a husband, parents, students, ad co-workers who depended on me. There was no time to play around with the future of my MS. So, I folded and agreed to try Tecfidera.
I was kinda excited about an injection-less drug. Tecfidera was the new wave of MS treatment. An oral MS drug! I knew from previous MS research that this was a HUGE, HUGE advancement in the world of multiple sclerosis. And I guess I wanted in on the action. MS is my constant companion and I needed to take a more active interest in the relationship. I scheduled my Tec trial over Christmas break 2012. I had great hope for this new drug. When I started Beta Seron I was fortunate to not experience any of the projected side effects of flu-like symptoms. I was absolutely certain that Tecfidera would also offer no such negative effects.
Oh, boy, was I ever wrong. At first I was fine. On the starter dose everything seemed to be absolutely copacetic (love that word). So when I doubled the dosage to begin the actual prescribed amount I was expecting the same result. Wham, Bam, No thank you, Ma'am!
The man upstairs was definitely looking out for me by giving me the foresight to try out this double dose over a school holiday because this middle school teacher was learning a lot about bathroom tile and commode functions. First hand. Up close and personal.
When I could break away from my latrine studies long enough to make the call, the medical advice I received was to take a few weeks vacation from work and allow the drug to acclimate with my body's system.
Teachers do not eat up sick and personal days to play with drugs, go to the beach, or do laundry. We are ON CALL for the required 180 hours of annual instruction time (and beyond) in the designed school calendar. Sorry, Charlie.
So, Tecfidera and I parted company after only three weeks.
A visit to another neuro crushed those plans. Is there a required neurological course titled You Must Be on Something 101? I understand the research and can see the data, but those are just numbers. I am a person. And not a numbers person. Totally right brained, I function on art, literature, and emotion.
But I succumbed to professional advice and began a round of Copaxone. Everything moved right along, until the itching began. Red, puffy, swollen injection sites made wearing anything with a waist-band unbearable. No blue jeans? No Lisa.
I have nothing against the variety of MS drugs. Nothing was working for me, though. The penalty wasn't worth the the promise.
And then I read about the Walking Drug. Amprya was receiving rave reviews in assisting people to walk more fluidly as well as aiding in balance, cognitive improvement and overall confidence in movement. None of the reported side effects totally turned me off, other than the risk of seizures And I could take Amprya on a more self-directed schedule. There apparently is no penalty for stopping the drug if it does not agree with me.
So, I have an appointment at the end of the month with my ever anxious neurologist to discuss this next step in my treatment. We'll see what he says on February 29.
Common Sense has already shown me that regular stretching and daily exercise helps with drop foot and walking gait, but if there is something out there to help me along, I'm game for ONE MORE shot at pharmaceuticals. ONE MORE SHOT...
Of course, I am a never-say-never kinda gal, so I won't pull the plug on the hopeful possibility that there is something out there that will work for me.
Multiple Sclerosis is a never ending subject for research. MS is proven to treat every single person differently. Symptoms vary drastically and everyone has her/his own story. Sometimes we are forced to take matters into our own hands in coping with MS; but there is always another door opening in the vast topic of treatment. I do not like ruling anything out until I give it a try.
Wish me luck,