I Got the Call…

“I got the call” sounds so dramatic, doesn’t it? On Friday afternoon, I had the conversation that I have been waiting to have since I saw my neurologist. I finally received the phone call so that I could organize my first delivery of Tecfidera.

I ended up sitting in the parking lot after work for about 40 minutes just so that I could focus on the call. I tend to be someone who has a lot of questions so I didn’t think that talking while I was driving would be the best idea. Not only that but with my Bluetooth, I feel like I’m yelling normally, and I don’t have much of a voice at the moment as it is with the cold from Hell.

The pharmacist confirmed my information, we talked about my MS itself, about how the drug is going to be paid for in my case, and the drug itself. I have read so much about Tecfidera and everything else at this point, that I feel like I already knew most of what she was telling me. I did have a couple questions for her and she was awesome about relieving any concerns that I had.

Receiving drugs like this is not as easy as going to my regular pharmacy. They need to be sent directly to me and they need to be signed for. This limits me to an 8-5 Monday-Friday delivery window which isn’t super convenient. Fortunately, you can have the drugs delivered to your home, work, a friends house, etc., just to make it easier for you to actually get the drugs. She also said that they call you every month to set up delivery so you can have it delivered somewhere different every month.

Working with drug companies like Biogen can really be described as receiving a service. I guess when the medication costs as much as this one does, they want to make sure you keep wanting to take it. I do need to make sure that I get the funding portion of the drugs sorted out but other than that I’ve had a great experience dealing with them.

Since I had received the call on Friday, the shipments for Monday had already been sorted out. This means that my delivery should be coming on Tuesday morning and I can take my first dose that evening.

When I originally read through all of the Tecfidera information, it said that you start with 120 mg twice a day for the first week. After that week, you’d go up to 240 mg twice a day for the duration of your treatment. Although I thought it was good to ease you into the medications, it did seem like a big jump after that first week.

When I spoke to the drug company, however, they informed me that my neurologist is scheduling my drugs like this:

Week 1: 120 mg once in the evening

Week 2: 120 mg once in the morning and once again in the evening

Week 3: 240 mg in the morning and 120 mg in the evening

Week 4: 240 mg in the morning and again in the evening (this is the full dose for the duration of treatment)

I am glad that she has me on a slower introduction to the medication than the drug company used to suggest. Although I am relieved to be starting the drugs (since every day I’m not taking anything, I feel like I could be getting worse), I am also anxious. I don’t usually get anxious before taking a new medication but these drugs are so intense. Not only that, but I know how important they are. I worry that I will be taking them and they won’t be doing their job of slowing the progression of my MS. I just need to try and stay positive, tell myself that they are doing their job, and convince myself that I won’t have any side effects! Sometimes it seems like staying positive through this is the hardest part at this point.

I will make sure to update after my first dose and as I go through the journey of starting my Tecfidera.

Thank you for reading, and keep smiling!

Amanda

“In three words I can sum up everything I’ve learned about life: it goes on.”

– Robert Frost

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2 thoughts on “I Got the Call…

  1. Sending well wishes! Changing therapy is never easy.

    Like

    1. Thank you! It’s been overwhelming for sure but things seem to be going well so far!

      Like

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