I have an appointment at my neurologist's office at 11:00 today. I'm excited and anxious about it. I'm assuming they will be taking me off of the Copaxone permanently. Clara* will be at the appointment along with the doctor (or nurse practitioner, I don't exactly remember) to go over my options.
I think I'm going to ask about the oral medicines. I'm totally over shooting myself.
All of the MS medicines have their own list of side effects, and some sound worse than others. All I know is that everyone is different. What works for one, doesn't work for another. Take the Copaxone for example...I had a multitude of side effects, yet other people did not. I felt worse taking the Copaxone than taking nothing.
As you can see, I started to write this before I went to the appointment today, but I didn't have time to finish.
My appointment was with Vera**, a nurse practitioner in the office. I hadn't met her before today, but I adore her! She is funny, she listens, and seems to “get it”. She absolutely didn't suggest any injectable medicine. After speaking with Vera, it seems that best option for me is to start taking Tecfidera. We talked about all of the oral medicines (Gilenya, Aubagio, and Tecfidera), and talked about the pros and cons of each one. One side effect I won't have to deal with is needle anxiety though. Supposedly, your body adjusts to this medication within weeks, and the side effects level off. We'll see. I may not have any of the side effects.
It's going to take about a month before I actually get the medicine. I have no idea how this will work with my crummy insurance, but Vera assured me that with all of the assistance programs out there, I'll be able to get the medication.
Also, she prescribed a medication to help combat the fatigue. I'm almost more excited for that one than for the Tecfidera!
I used to take Provigil for my fatigue. It was wonderful at first. About 20 minutes after I took it, I could feel it start to work; it was like a switch flipped on, and I was close to me again. The doctor who prescribed it told me that it sometimes stops working, and when that happens, take a “Provigil vacation” for a couple of days. That worked for a while. Then it stopped working. I would take it, then a couple hours later, I'd take another. Nothing.
I tried Nuvigil. That never had an effect on me.
I'm excited to try this new medicine. In fact, I'm just about giddy over it! I can pick it up now; it's ready, but I can't start it until tomorrow morning (or I'll never sleep, supposedly).
One odd thing about today's visit; even though I'm no longer using the Copaxone and I will be starting a different medicine, I'm still in the clinical study. I'll be listed as non-medicated, or some such label. Clara said they still want to follow me (I'm assuming it's not me specifically because I'm just that awesome, I assume it's more of a general thing). I will still get labs and office visits covered every 2-3 months. I don't understand why they are doing it, but I agreed to it.
*Not her real name
** Not her real name, either
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