After you’ve gone over all of the blood work, the lumbar puncture results. You’ve looked at all the black-and-white images of your brain, and may or may not have received a black or white answer, your doctor brings up the last topic of your appointment.
‘Medication will now be a permanent part of your life’, he says. ‘We don’t know how they work, or why they work, they just work. Most of the time.’
The doctor piles binder upon binder into your outstretched arms and eventually you look like a young child on the first day of school. Overloaded and overwhelmed, you leave the office, on your way to make your own decision about which medication is right for you.
That was my scenario. I walked out of my doctors office with huge binders from pharmaceutical companies, that were so bright and colorful, trying to be cheerful in spite of a bleak situation. I had several options at my time of diagnosis, all injectables as oral medications were still a ‘someday’ thought. I had to choose between injecting one to three times a week, but feeling like I had the flu, and injecting every day but possibly having much fewer side effects. What a choice, right?
Honestly, I felt lost. I didn’t know who to talk to, where to get the best advice or which decision would hurt my body less. I knew I didn’t want to feel like crap every day but I didn’t want to inject myself every day either. I definitely felt stuck.
Eventually I decided that how I felt on a daily basis was more important to me then the number of injections I would have to do. After all, I still had to work and try to function as normal as possible, if that was possible. I chose Copaxone as my first defense against MS.
Choosing a medication for MS regardless of it being your first or fifth is a very tough decision. Many things should be considered; its efficacy, whether it’s oral or injectable, possible side effects, how long it’s been on the market (especially in the case of oral medication) and the historical data. I took into consideration what data I had at the time to make my decision. What data you take into consideration is very much about you, and where you are in life. If you know that doing injections, even only once a week will make you non-compliant with your medication, then all injectables should be off the table. Or if feeling like you have the flu would make you the most miserable person on earth, and unable to work/take care of your kids/feel like a human, then those medications should be off the table as well.
Reaching out for advice from individuals who have been there before can be helpful as well. Talking to someone who has been there before, having to make that decision, who knows what it’s like, can be comforting. Although, every person is different, so each medication will affect each person differently. What works great and doesn’t give any side effects for one person, may not work and make another feel down right awful. When I was looking up patient reports about Tysabri, I found this to be true. On message boards the comments would be back and forth between ‘It has saved my life’ to ‘It is terrible’. You’ll never know how something works for you, until you try it.
As is the case with many things in life, it’s about being honest with yourself and knowing what you will or will not put up with. It’s also a time when reaching out for support and guidance can be helpful, but remember you’re walking your own journey, not everyone else’s.
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