For the past week I have spent way too much of my mental space thinking about that damn doctors appointment, and the future of my MS treatments. I am torn on my feelings on so many levels, and I am praying for answers to so many things.
Let me bring you in on a secret, MANY people with MS struggle with the decision of which medicine to take. I am not crazy. I wasn’t aware of this being an issue until I started researching. Years ago, my second neurologist gave me suggestions, but let me make the decision on my treatment, and I thought this was great! Now my third (and current) neurologist is strongly suggesting that I consider switching, and again has given me options, only this time I don’t love that the decision is mine to make. I feel caught between three decisions, and none of them are ideal. Here are my options.
- Stay on Copaxone. I have no negative side effects. I am a little tired of doing the shot, but it really is not that big of a deal. I have been doing this for 3.5 years, so it is not that I can’t do it. So you might be asking; why consider switching? Well, it turns out that this is one of the safest medicines I can be on from a side effect standpoint, but one of the most risky as far as MS disease progression. I am basically only 34% protected from relapses. By that I mean, relapses are reduced by 34% vs. a placebo during the clinical trials. Not really that impressive in the spectrum of all MS drugs that are available.
- Try Tecfidera. This is a twice a day pill that would allow me to get away from shots. Depending on which trial you look at, it seems that I would be around 50% protected from relapses (I am wording this as such because this is how I think about it, it is NOT medically correct, but this is my blog, so deal with it). So that is better protection. There are some pretty intense GI issues that happen to quite a lot of patients taking this. Don’t really love the idea of that. Pus, I am not great at taking medicine on a regular basis. There is a reason that oral contraceptives don’t work for me. Even now, I sometimes forget my shot, but then just do it the next day. It isn’t an issue since it is only 3x a week. However, by the time I would remember to take my missed dose of this medicine, it would likely be close to time for the next dose, so makeups would be hard, or impossible. But, it seems like a good middle ground of I can remember to take it, and don’t suffer from the intense stomach issues.
- Start Ocrevus. I will be honest, this is what I am leaning toward, I think… At least in the fleeting moments when I think I have made up my mind, this is my decision. I have questions that I would like answers to before I seriously consider it, but it seems like the easiest option. I mean, get infused once, and don’t think about my MS for six months-no brainer right?! And it is being called a “game changer” with many people indicating they have stopped having relapses AND gotten better from previous attacks. Hello! Sign me up! Then I start to think more. My fear: I will spend those 6 months not thinking about MS because I will ALWAYS be thinking about PML. Will that small little risk drive me crazy? It almost has already! It terrifies me. The idea behind me switching to a different drug is because I need to be healthy for my children and I don’t want to be disabled. However, if I die from a freaking brain infection, I would take being a disabled mom any day! Further discussion with my Neurologist #2 pointed out that the risk is SO small, and technically can’t be directly tied to Ocrevus (Ocrevus patients who have had PML have been on Tysabri in the past, which is directly tied to PML, many people on Tysabri have had PML, and for this reason this medicine was never an option for me). The chance of me having relapses on Copaxone is much higher than the chance of me getting PML on Ocrevus.
So, what am I thinking? Well, since I am JCV positive (if you don’t know what this is, you can research it for a full understanding. Many people are positive, but you will likely never be tested for it unless you are needing to be on some sort of immune suppressing medicine) my risk of PML is slightly higher. Basically, your immune system keeps this virus dormant in your body. But suppress that immune system and that little guy can grow stronger and can cause a brain infection that is pretty serious. I know that blood work can tell you what you index is, which gives an idea (possibly) on how likely PML is. When my blood-work was done in GA, that index was not assigned/tested. I would like this done. And then I would like to know how often that is tested during treatment. It feels like it should be every 6 months, at a minimum. But again, I am not a doctor. Just an opinionated patient.
When people with Tysabri get PML, they immediately stop treatment and fight the infection. Tysabri is given once every 28 days, so if PML happens, they can react quicker. Ocrevus is given once every 6 months, so if you get PML one month in, you still have 5 months of medicine in your body working against you. I don’t know what would happen, and it sounds like nobody does. That is scary to me.
So, what now? Well, in the short term I am going to try to stop thinking about it. I have checked with insurance and my local hospital on coverage/infusing me. Perhaps one of those will make the decision for me. If not, I don’t have to make the decision now. I am going to sit back, enjoy life as usual, and worry about this at a later date. I will pray for clarity, and that as more and more people start with Ocrevus, we continue to see the risk of PML decrease with the larger sample. I think that as time goes on, and more research is available, I will feel better. I hope that as time goes on, we just see a cure, but for now, it sounds like this is as close as I will get.
I’ve got less than two months until I turn 30 (which also happens to be a week before Ocrevus celebrates it’s 2 years since FDA approval anniversary). I have a lot of fun things planned during the next two months to celebrate, so I hope that I can take my mind off this. I’ll stick with Copaxone, and then closer to my next MRI, I will make my decision on what my future looks like. For now, my life is happening! I will update you guys on this situation as it continues to unfold.
❤ MS Andrea Jackson