I decided that I guess I would take the MS meds after all. But despite that fact, I am still absolutely terrified of the meds.
More specifically, I’m terrified that I will die as a direct result of the meds. That’s not an entirely unreasonable risk, either, even if it’s statistically uncommon.
First up is Ocrevus, which scares me a lot because it’s new and there has already been an FDA investigation launched because of associated deaths. This is not surprising because the FDA halted trials of the same drug due to too many deaths in both rheumatoid arthritis and lupus before it somehow got approved for MS.
My neurologist now requires more frequent MRIs when you take Ocrevus because they expect to start seeing increased cases of the deadly brain infection PML. Since the symptoms of PML are so similar to the symptoms of an MS relapse, it can be hard to detect it before it kills you. Once Ocrevus is in your system, you can’t get it out for six months.
It’s not hard to predict that there will be more Ocrevus deaths from PML because there are PML deaths with Rituximab, a sister drug nearly identical to Ocrevus but not as often used in MS patients.
So my neurologist said that if I don’t want to take Ocrevus, I can take Gilenya or Tecfidera instead. But those are both also at higher risk for causing PML. Because I am very high-positive already for the JC virus that makes MS drugs more likely to give you PML, none of these are great options.
In addition to all that, people on Gilenya have to have their heart monitored during the first dose due to the risk of sudden cardiac death while taking it. But that cardiac risk doesn’t go away after the first dose and people can and do die from sudden cardiac events on it.
My mom had a heart attack at just nine years older than I am now, I know that I have grade 2 diastolic dysfunction, and my cardiologist wanted me to get a stress test two years ago to measure my current risk but I didn’t get it done because I didn’t have the $800 for it. I have chronic anemia that isn’t changed by the fact that I have consumed two cups of spinach every day for over a year. I don’t know what’s causing the anemia but I do know that it’s damaging my heart.
So I definitely don’t feel safe taking any drug that has a risk of sudden cardiac death. Those outcomes may be exceptionally rare, but I’m at higher risk than the average person.
Part of the meds decision is definitely also about my insurance. It’s so bad that I know I can’t afford all the tests I need to make sure I’m safe on these meds. It’s also so bad that if I’m feeling unwell, I’m going to put off going to the ER because I can’t afford it.
In fact, that’s exactly what I did last year when I was hospitalized the second time. Before I went to bed, the right side of my face was drooping on one side and I had all the typical stroke symptoms, but I still went to bed to try to sleep it off anyway. Given that they had a hard time determining if I had a stroke or an MS relapse once I went to the hospital the next day, I realize how risky that was.
But with the insurance I have, I’d probably still do the same if it happened again. And for that reason, I walk around in a pretty much constant state of fear. I know I can’t really get the help that I need when I need it, at least not without putting us in debt and causing financial hardship.
So is it really a good idea to be on a high-risk medication?
At the same time, the doctors and the pro-meds people are pretty great at giving effective guilt trips–especially because I’m getting worse. Don’t I want to try to stop this from getting worse than it already is? Don’t I want to be alive and healthy for my husband and kids? Don’t I (dare to dream the impossible) hope to someday be well enough again to pursue a career or regular activity that gives meaning to my days?
I guess it comes down to the fact that I already know how I feel now, and I’m likely to feel worse on any meds I start.
I could try taking an older interferon drug instead, but those have known side effects of making you feel like you always have the flu plus causing severe depression. I already know severe depression and I’m sure I have it now (who wouldn’t, after having to give up their hope of a career?) But all the antidepressants always make me feel worse than when I’m not on them.
Maybe that’s just what life is when you take meds for a chronic condition: feeling constantly headachey, nauseous, gaining weight (since every med causes weight gain in me), but in return, you might get some symptom relief of your main illness?
In the case of MS meds, I can’t even expect symptom relief, just that I might not get any worse.
Depression meds have never been worth the trade-off so far, either: in addition to the side effects, the way they work never actually makes me feel good. Antidepressants do take away the depression but they also make me feel completely flat, unable to feel happiness at all. That doesn’t seem worth the weight gain, headaches, and nausea.
How do I know that MS meds will be any better? Will I have constant headaches and nausea and flu-like symptoms, while also literally risking my life, just in the hopes that I can be around longer?
I know this is the depression speaking, but I guess why do I want to be around longer? If I never feel good again, if I can never have a career, I’m just marking time hoping to be there for the bright spots when my kids graduate, get married, etc. Assuming I live even 20 more years, that’s a whole lot of time spent sitting at home doing nothing, not feeling well.
I want to turn back the clock to when I didn’t have these problems. When I could think clearly. When I still had hopes and dreams and a reason to believe I could make them come true.
Yet despite all this, I’m still ironically afraid of taking a drug that will kill me. I have just the tiniest sliver of hope and value for my life that someday it will get better again, but I don’t have enough hope that the drugs will make that happen to want to risk my life.
But even if it will make my quality of life worse and might kill me, I feel like I owe it to my family to do what mainstream medicine says is the right way to treat MS. Because then at least I tried and they won’t be able to blame me if I get worse.
Honestly, it really feels like my life is over either way. Maybe I can prolong some of the things I enjoy like driving, even if I can’t make it to concerts or travel or shop for long anymore. Maintaining fucking basic functions like driving and walking has to be my new reason for hope. And to be honest, that just doesn’t seem like much to keep me going for the rest of my life.