Happy Sunday Everyone! I am currently stuck at work but I hope that you all are getting up to something exciting today! My most recent post had discussed the medication options that my neurologist had given me. I met with her on Thursday so I have a bit of an update about the medications and thought I should fill you in.
First off, I just need to say that every appointment I have with my neurologist, I am reminded more and more how much I like her. She never makes me feel like I am being rushed out of the office which is such a relief because I feel like I always have so much to discuss with her.
She did have the results of my MS panel of blood work and my lumbar puncture. Everything in my MS panel came back normal and there were no cancerous cells in my puncture which we already knew, but is still great to hear! One thing that they are checking for with the puncture are oligoclonal bands (O bands). They make sure to take your blood at the same time to make sure that if there are O bands present in the lumbar puncture, that they aren’t in your blood as well. If they are in your blood, than this may indicate a viral infection of some kind, whereas if they are only in your cerebrospinal fluid, than it is indicative of MS.
She said that I did not have any in my blood but had 8 O bands in my cerebrospinal fluid which is “quite positive” for MS. Based on these results, combined with my MRI, I received my official diagnosis on April 19 2018. She was fairly certain prior to this appointment, but this was the official conversation. I guess I should have been more affected by this official diagnosis at the time, but I’ve had more than a month of processing time since my MRI and I had already told myself there wasn’t hope of it being something else. It was still a little bit of a jab hearing it for sure though.
After we talked about that, I mentioned to her that I didn’t think I would be able to take her first choice of medication because I wouldn’t be covered for it financially. She hadn’t tried to prescribe that drug since she started practicing in Canada so she hadn’t known about that part. Based on that fact, we decided that I was going to be taking her second choice of drug which is Tecfidera.
I discussed with her how scared I had been about the possible PML side effect (I discussed this in a previous post) and she reassured me that it is a much smaller risk with the Tecfidera. In fact, it is such a small risk that they don’t even test for the virus in your blood when starting this medication. For some of the other drugs, they need to test for that virus to see if taking the medication places you at a a higher risk.
I asked her about a thousand questions that I had brought with me in my MS journal notebook and she was wonderful about answering all of the ones she could, and trying to find out the answers to the rest. We filled out my paperwork to send to the drug company and discussed what the timeline would be like.
The first step was that I had to have some blood work done to check my blood cells and my liver function. I will need to have this test done every 6 months while I am on the drug to make sure that I am still as healthy as possible. I need to wait for those results to come in and then they can be sent off to the drug company.
Once all of that is sent off, I need to wait for the drug company to contact me directly. It sounds as though I have a nurse who I will speak to every time they call me which is kind of nice. Just another member of my medical team who will be part of the process. I’m not sure what we will talk about when they get in touch, but I am hoping that will be happening this week.
I signed a consent form both for taking the drug and also saying that they can contact me. One of the things that they will contact me about is reminding me to get my blood work done when I need to every 6 months. As odd as it is that the drug company will be contacting me directly, it seems like they provide quite the service to try and make sure people keep taking their medications.
I asked my neurologist how long it would be before I could expect to actually start the drug. She said that we had to wait for the company to get her request and the results of my blood work, and then after they had contacted me they would send it out. Her estimation was that I should be on the drug within a month but it could be less. A friend of mine who recently received her official diagnosis and is going to be taking Tecfidera met with her neurologist on April 9 and is starting the drug on April 23. I am hoping that my process is as quick as hers because that is about half the time that my doctor guessed.
Since the Tecfidera is not a regular prescription, I won’t be getting it from my normal pharmacy. It seems as though they send it straight to your house and you have to be there to receive it from them. I am sure I will learn more about this when they contact me but having to be home from 9-5 during the week isn’t exceptionally convenient with a supply teacher’s schedule.
Lastly, I’d like to discuss side effects. When I was trying to decide between the Gilenya and Tecfidera originally, I was much less scared of the side effects for Tecfidera. I told my doctor that I was almost relieved when I found out that I couldn’t be funded for the Gilenya at this point in my journey. Of course there are still serious risks for the Tecfidera but the chances are smaller so I am more comfortable with it.
The most common side effects from Tecfidera are gastrointestinal issues and the flushing of your skin. Of course not everyone has these and I am not usually prone to side effects with medications so I am hoping that I won’t have any side effects at all. There are lots of forums talking about ways to help reduce the side effects if they do appear though so I feel like I have support regardless.
I will make sure that I document the process when I start taking the drugs in case there is anyone out there who is about to start the drugs themselves. Sorry that this ended up being such a long post again (they always do), but I just feel like there is always so much to say.
For those of you still reading, thank you, and keep smiling!
“Never run from the enemy, tackle them”
– Victoria Addino