I get a lot of questions about multiple sclerosis (MS) and how I cope with it. At the base of these questions seem to be two main themes:
1 - Needing to make decisions with regards toward personal medical management and being overwhelmed by it.
2 - By the uncertainty of knowing how to best help yourself when you really don't have a clue.
Because of these frequent questions, I thought I would share how I personally came to the conclusion not only to "switch" drugs after being on the same treatment for over ten years, but also why I entered into a medical study as well.
When I was diagnosed in 2003, I selected a specific medication to treat my MS simply because it was a monster-sized needle. The needle made me feel like I was being just as aggressive back at my disease as it was being with me. But injecting over the years has never gotten any easier.
I was faithful and can say that I have never missed an injection. I am currently categorized as stable with medication. The injection anxiety has been increasing though.
When a study became available that was essentially my same medication, just yet another different administration of it - I jumped on it. I'd been all of its other administrations, why not again? Though technically this is a different drug and in the end it will have a different commercial name.
The reason I was tempted was because I get to lose the monster-sized needle and I still get to use an auto-injector pen; which just makes things real slick for injections.
Though the monster-needle goes away, I still get to be aggressive back at my MS, as the dosage amount jumps from 30mcg to 125mcg. An additional perk is that the injection is no longer every week, rather they are every other week.
So the logic behind switching made absolute sense for me: essentially the same drug, smaller needle, auto-injector pen, less frequent injections, but with an aggressive dosage amount.
I began the study drug in November and took four injections (8 weeks) to gradually work up to the full dose. I've not had any big changes in side-effects, in fact, so far the side-effects have apparently decreased.
I have had some trials with my health during this transition though. I have been pretty darn sick since the beginning of December. Was it stress from school, being a mom, winter, increase in meds, or even a combination of all of the above? I've no idea.
The real value of changing medications won't even be known until follow-up doctor appointments throughout the medical study and future MRI results.
It is a risk, a gamble… but so is getting behind a wheel to drive. I don't know what will happen, but I am just going to drive assuming that I will arrive safely - regardless of the route I take.
So how am I best helping myself when I really don't have a clue what to do about my condition?
- I'm taking charge of my medical management and participating in the decisions.
- I'm taking care of myself physically, mentally, and spiritually, in hopes that it makes me a better follower of Christ, wife, mom, daughter, sibling, and friend.
- I follow my gut, regardless of popular opinion.
- I trust that I am doing the best for me.
- I try my best to live as though each day were my last and at the same time, I make plans for the future.
- I don't have time to be bitter, afraid, or drag my feet in indecision. This doesn't me I don't experience it, it just means I try not to be there for long.
I do these things, because I can. I may experience sadness and sorrow from time to time. I may struggle. Life is about living, serving, loving, laughing, and making memories. There's no doom in that; even if I have MS.
Right now my focus is on rebuilding my cardiovascular health after being so darn sick. I'm going to start right now by going to bed this instant. Yeah! Healing during sleep!
Right now my focus is on rebuilding my cardiovascular health after being so darn sick. I'm going to start right now by going to bed this instant. Yeah! Healing during sleep!
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