Saturday, March 18, 2017

Big Pharma or Big Brother?

     In the past few years, I have done A LOT of drugs. I am NOT going to decry one over another. With MS the key word is sporadic, and what is awesome for me might stink for you.I have included a link to each medicine's own webpage so you can better read about each one. So, what follows is my best attempt at an impartial account of my experience with each and what lesson(s) I took from it. But, as you read, my bias will become highly evident. 😏

Betaseron (546 injections*)
     This was the first MS med I tried. It's an injection every other day. It did great for a few years and then tapered off. From my time with this medicine, I learned just how important it is to pay attention to which day is a shot and which isn't. 
Copaxone (1277 injections*)
     This med came with daily injections, and I again became optimistic, until a severe relapse left me bedridden, barely able to see further than five feet, and unable to taste. This medicine taught me the truest meaning of the phrase, "Needle fatigue."
Tysabri (12 infusions*)
     This for me, and many others, was the saving grace. I had to sit for about an hour of infusion, then 45 minutes of observation. The infusions were only a once a month, and by the fourth infusion I was driving, walking, and working as a part time tutor. From this medicine I learned the importance of patience. It was a one hour infusion followed by a 45 minute observation. After two infusions, I was getting anxious after seeing no change, then after three a minimal change, but after four, I started seeing dynamic changes. IF there ever is a solution to the JC virus, then I'm going back to it ASAP. 😏
Tecfidera (547 pills*)
     Because the danger of PML (Progressive Multifocal Leukoencephalopathy) was established before I began taking Tysabri, I started searching for a DMT (Disease Modifying Therapy) to replace it when my year with Tysabri was done. I discovered BG-12, which later became Tecfidera. After reading articles and following it, I was more than eager to begin it after stopping Tysabri. It did well, but then my leukocyte count plummeted. I received a call from my MS doctor's office to stop it NOW. Apparently, the dreaded PML surfaced with Tecfidera. So, I was placed on another pill. Tecfidera taught me to appreciate my MS doctor. My leukocyte count dropped dangerously low, and as soon as it showed, his office called me and had me stop Tecfidera that day. They had even called me after hours.
Aubagio (547 pills*)
     Aubagio did well, as far as my MRIs went, but my walking started dropping quite a bit. I went from a cane to a rollator to a mobility scooter. Now, I'm look at a manual wheelchair or a complete walker. Aubagio taught me how to take bad news well. My walking tanked, I wrecked a car, and now I'm looking at a possible wheelchair. But I won't let it get me down.
Rituxan/Rituximab (3 infusions)
     Rituxan is the medicine that I am currently taking. It is a six hour infusion that begins after I have been given the pre-meds. I leave my house at 4:00 AM and am home by 4:30-5:00 PM. It is an interesting ride so far and I have seen some improvements...stay tuned for more. Rituxan is still teaching me, mainly to stay focused.

*Values are estimated; I am horrible with numbers. 

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