Hello readers! I hope that you are all having a wonderful day!
I figured that I would write a post about choosing a medication because that is the next step in my MS journey. That being said, I have not started on any drugs yet and I certainly am not any kind of expert.
The thought of having to choose a drug to hopefully slow down or stop the progression of MS is terrifying. Not only are you hoping that it does what it’s supposed to, but you also have to decide what kinds of possible side effects that you can live with. Please tell me that I am not the only one who is super scared about this part.
When I was first waiting to see my neurologist, but had found out that this was likely MS, I may or may not have googled some stuff. I know, I know. Googling things when you are freaked out about something is the WORST idea. Especially for someone like me who has anxiety as it is. I tried to be selective about what I searched so that I could avoid personalized forum discussions and focus more on medical articles.
One thing that I found was that studies have shown that medicating at a younger age and earlier post diagnosis can be beneficial for your prognosis. This encouraged me since I am only 28 and only just received my diagnosis. I now know that my scans look pretty mild compared to some so this is promising as well if I can get on top of things with medication. However, I did come across some discussions where doctors do not believe in medicating until things progress further
I was so scared that I was going to meet my doctor, and she would have these same kind of beliefs. My fears were quickly relieved though because she strongly believes in medicating as soon as possible. I am not sure if this is because she originally practiced in the US and they are a little more willing to medicate their patients down there. Regardless of the reason, I am so glad that she feels this way.
Another initial stress that I had before meeting her was worrying about the cost of the drugs. For those who do not live in Canada, I guess I should explain that we are quite fortunate. I know that there are many places that are lucky like we are but it will make more sense to some if I discuss this part.
In Canada, we have universal healthcare, meaning that some of our tax dollars go towards our medical care. When I go to the doctor or hospital, have blood work or diagnostic scans like my MRI, I don’t have to pay to have them done. However, most prescription drugs are not covered under this universal care. Many people have private benefits through their employers or pay into their own private insurance. I do not have any kind of private insurance because up until this point, I didn’t need to worry about paying for too many prescriptions.
One of my colleagues also has MS and we were discussing the drug options that were out there. She had told me that some drugs for MS cost about $1,500 per month which totals up to $18,000 a year. I was absolutely panicking because I just can’t afford that kind of payment for a prescription. I mean, we would have figured out a way to do it because my health is so important, but it would have been a struggle.
I breathed the biggest sigh of relief when I met my neurologist and she told me that MS drugs are covered under a special part of our universal healthcare as long as you meet the criteria for an MS diagnosis. To know that I can focus on my health and not on how I’m going to pay for it was just so comforting. I often think of my friends who live in the US and have to face that turmoil anytime something serious happens with their health. I couldn’t imagine having to choose between being healthy and being able to support yourself in daily life.
Now that I knew that I would be covered, she told me about the two drug choices that she wanted me to read about and decide between. The two drugs that she listed for me are Tecfidera and Gilenya. I did ask her which her first choice would be and she told me that she would prefer Gilenya.
I read a lot about these two drugs and went through a period of a couple weeks where I felt panicked about them all the time. I figured that I would go with her first choice of drug because MS is her specialty and she knows best. However, Gilenya has some pretty intense possible side effects that were really scaring me. I also learned the actual cost of both of these drugs and it’s even more than my colleague had thought it was so I had an extra “phew” moment.
The main possible side effect that scared me was the risk of developing Progressive Multifocal Leukoencephalopathy (PML). Basically, there is a virus that sits dormant within many people called John Cunningham Virus (JCV) that is harmless with a properly functioning immune system. However, all of these MS drugs are immunosuppressants so there is a chance the JCV could become active because your immune system is compromised. If this happens, it can cause PML which is a viral disease within your brain that can quickly cause severe neurological disability or death. No big deal right??
None of the other side effects scared me as much as this one. Both the Tecfidera and the Gilenya carry the risk of PML but the risk is higher if you take Gilenya. I know it may be silly to be so scared of an unlikely scenario, but I also thought it was pretty unlikely that I’d ever be diagnosed with MS and here we are.
Now, this being said, I have done some reading after these few weeks of freaking out. I have read through the requirements for having the cost of the drugs be covered and I don’t think I can actually take Gilenya at this point. It sounds like in order to be covered for that one, I’d have to have tried another MS medication first and either have new lesions compared to a previous MRI or have lesions that enhance when given the MRI contrast.
None of that applies to me so I think Tecfidera will probably be the first choice for me. I guess that this is a silver lining because in order to be covered for the Gilenya, I would have to be worse off than I currently am. The most common side effects of Tecfidera are flushing and GI symptoms which are tolerable if it means that the drug is doing what it’s supposed to do. I am quite sure they will have to check my white blood cell count fairly regularly because the drugs weaken your immune system and they don’t want things to get dangerously low.
I have a whole list of questions to take with me for my next visit. I am seeing her on April 19 2018 to get my results from my MS panel of blood work and I am assuming we will talk about a course of action for medication as well. I will make sure I update you on which kind of medication I am actually set up to take. If any of you have MS and are on either of these drugs, leave me a comment and let me know! I would love to hear about your experiences!
For those of you that are still reading, thank you very much and keep smiling!
“It is health that is real wealth and not pieces of gold and silver.”