Experiences of Being on Disease Modifying Therapies

The other medication that I did want, and I think, I wish I was more adamant about pushing is that Ampyra©. Which I call it my-- that's my miracle drug. Before that my legs hurt, my, my-- I couldn't walk, everything was in pain. Whether it's at, it's at, during the day, during night and I, I would take ibuprofen like, it's candy. Like, literally six at a time, every couple hours. And the one thing that, and maybe things have changed, every time I brought it up to my neurologist he would do the walk test, and I guess I was never bad enough. And finally, it was bad enough, so he gave it to me. And since then, I will never skip a day of that, because it literally, it just doesn't hurt. And I don’t know if it’s between the Ampyra© or the Plaquenil©, you know. What-, which one is the one that's making it my life's not hurt, but I do feel that the Plaquenil©, which is for the connected tissue disease.

Mhm.

That really helps at nighttime. And the, Ampyra© really helps, like, the day-to-day kind of business, so it's not so painful, like walking.

INTERVIEWER: So, can I ask you more about your medications. So, when you were making these decisions about what medications to be on, who was advising you and giving you advice about what medications or treatments to take?

Dr. [NAME]. Every step of the way it was what he was suggesting. And he agreed with-- as part of my exams I'd have to walk, I think, 50 feet down his hallway. And he would be there with a stopwatch, timing me. And that kind of got worse and worse no matter which of these medications I was on. And finally, my last visit to him, I was just in the wheelchair. There was no attempt to have me get up and try to-- I couldn't do it. I wouldn't have been able to do it. But things like that just got worse and worse. Yeah, I think he could tell, every time he examined me, that certain things were just kind of falling apart. But it didn't seem to matter which medication I was on. I was continually on something for years. He kept switching them because-- I don't know why. I mean, he was the one that said, “Let's try you on Avonex®,” or “Let's try you on Betaseron®.” And somewhere in there was the Linomide® experimental drug trial that we stopped. And then the last thing was that Novantrone®. And I did hit the limit of what is safe to take.

And so Tecfidera, that did not work. And I went on Rebif again, and that did not work already anymore, too. And then they gave me Tysabri, that did not work. Actually, my doctor even told me that it's probably going to-- if I don't take it in a month-- or maybe it's already too late. But he said, “If you don't take it in a month, it's not going to work.” And it did not work. And I don't know if that month was crucial or it did not work because it only would have worked two years earlier. So basically, Tysabri did not work. Then I took Ampyra. And again, it did not work although many doctors thought that I'm an ideal candidate. And then I tried rituximab, and that did not work. I had a few plasma transfusions. Yeah, that's nothing. So yes, Ocrevus is probably the only thing that works now. Well, maybe I'm just imagining that it works because I have not seen-- until I started sitting at home all of the time, I have not seen a major progression. But on a daily basis, of course, I'm taking baclofen and tizanidine and the millions of other medications. And I'm also taking Ampyra although it doesn't work. But who knows, so I keep taking it.

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And Ampyra is—well, all of those medications, especially Ampyra, the hope was it will make me walk faster and easier, and it did not. And rituximab, the same. They even gave me plasma, plasma transfusion, plasmapheresis it was called. And yeah. But every time, I was so hopeful. I was convinced that it's going to work. So, it's not that I was negative or something, but just objectively, it did not make me work better, or faster, or easier. So, nothing has changed after I took those medications. That's how I know it did not work.  

I started with Copaxone©. And that gave me such horrible chest pain I couldn't concentrate at work. I couldn't focus on my patients. I was focusing on my chest pain. So that became an issue. So, I just stopped taking it. I'd tell the doctor. And I also had injection site reactions. I had welts. And he'd say, “Well, you just need to take it. You just have to deal with it.” So, I just quit after six months. And then I changed neurologists because he refused to change to another medication. I changed neurologists. Then I went on Rebif©.
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And I started having-- this is by 2006-- I was having nonstop periods. And the nurse practitioner in my OB-GYN's office said it was because of Rebif©. So, I wanted to change, and he said no. And I wanted to change to Tysabri©. And that's one drug I'd been trying to get on since 2004. Then they took it off the market and they said it's too dangerous. So, then he put me on Avonex©. And that was fine. I tolerated it well. And fast forward to 2009. I'm still relapsing. So, I changed neurologists again, and I go see somebody else. And she doesn't do any MRIs or anything. My last brain was 2004, and this is 2009. My last C spine was 2003. And then she just keeps me on Avonex©. And so, I get fed up because I'm still relapsing. So, I just go off and I go on a paleo diet. I lost a lot of weight. I felt wonderful. Then I went completely blind a few months later. That was 2009. I still didn't want to take the Avonex©, so I just stayed off of medication. And I had another relapse six weeks later, lost my right side. And that's come back a little bit, but it's not normal. It's not like it was before. This was one of those defining moments. So, I stick with this neurologist. And then in 2011, she finally lets me go on Tysabri©. I was JC positive and I didn't care. I just wanted to take this drug. And it was a game changer for me. It was like a miracle drug. But I could only stay on it two years because I was JC positive. So then, I went on Tecfidera©. I continued relapsing on Tecfidera©. Then I was fed up with this neurologist because I didn't want to take Tecfidera. I still kept relapsing. She kept ignoring me. I still hadn't had another MRI at this point, since 2004, even though I should have because I was in the TOUCH program. So, I switch to another doctor in 2015. And she says, well-- and we both agreed we'll wait because we were waiting for a new drug to come on the market. So, in the meantime, I have another relapse and end up in the ER. I have no use of anything. Then a month later, I lose my vision again. Then a month later, I have this scraping all over my skin, bilateral, like somebody's taking a hot something and scraping all over me. So, then she sends me to their MS specialist 70 miles away. It's not the one I was trying to see earlier. And she diagnoses me with progressive relapsing and puts me on Rituxan©. That was like a miracle drug, too, for the first few years. It really helped with fatigue. The relapsing stopped. And then, all of a sudden, in 2017, I started relapsing again. 

And I was on that medication for, I think, maybe six months. And it sucked. The main side effects I had were these flu-like symptoms that clearly fluctuated with the injections. So, I was on a three-day-a-week schedule. So, my longest stretch of no medication was always when I felt the best. And then after my injection I would usually be fatigued. And I think the biggest issue was my migraines would be terrible because I was having this inflammatory, flu-like thing. But I am a person with migraines. And so, any sort of disruption to my baseline basically just makes my brain go crazy, and I'm in a lot of pain. And so, at the time I was working, like, 75% effort at this consulting firm. And I just kept calling in sick because I was in so much pain from the migraines. It took me, I think, a couple of months to do the math and figure out it actually was really strongly correlated with when I was doing my injections. So, at that point was when I figured out, like, “OK, I think there's a problem with this medication, and it's not the one for me. I need to look into something else.”

I was very anxiety ridden during the first four months of the every-other-day injectable. One of the symptoms is you feel like you have the flu the day after. So, every other day for about, I guess it was five months total, I had a two-, four-, six-, and nine-year-old at home, only one was in school, and every other day, I was on the couch with flu-like symptoms. It was hard. It was harder than my year of breast cancer treatment, I will tell you that. It was hard. After the four months, when my liver function failed, I was really grateful, actually, to be able to go off that medication. Because that was one of those medications where I had to balance whether the side effects were worse than the MS treatment. Because the side effects were pretty debilitating with me home with the three young children.

INTERVIEWER: So, then the first two MS medications that you had to stop for the liver [um] numbers and the injection reactions, what was that like for you to have to stop those? How did that process kind of play out?

So, I have to say I was actually really excited …

INTERVIEWER: Okay. Uh-huh.

When the first medication failed because I just was so sick every other day with that every-other-day injection. I think, eventually, they say your body gets used to that. My body, over the four to six months I was on that, it just never got past that initial new like every-other-day symptom. And it just was hard. As I said that October, through like March, I want to say October through March, that was harder than my year of breast cancer treatment. I mean, it was hard. And that was just the side effect of the medication I was on. I mean, like, so when you think about that, it’s kind of a hard pill to swallow like, you know, that the medication you’re on is making your life harder than the disease you’re on the medication for. And, I mean, that’s why when you see these commercials for medications. and the list of side effects is like three pages long you know, you wonder, you know, it’s kind of this balancing act, like is it worth it? I was getting to the point where I didn’t feel like it was worth it. So, when the doctor said, your liver functions are bad, you’ve got to go off, I was like, okay.

How long were you on the different medications, and what were the reasons behind stopping them? 

Avonex©, I was on about seven to eight years. And a doctor recommended I stop and try something else, because I was having more frequent relapses. Copaxone©, I was only on it for a couple weeks. I had a terrible reaction to it of palpitations, and also some weird bruising in my stomach from where you get the injections, but mainly because of the palpitations. It was stopped after two or three weeks. Tecfidera©, I had an allergic reaction to it. About six weeks into it, I woke up with swollen lips, swollen eyes, and hives. And it wasn't until about six weeks that that hit, so they took me off of that.

INTERVIEWER: So, you mentioned earlier that there have been periods where you've gone off the medication? Can you talk about those? 

Sure. And there are times where I'm trying to conceive, and also then when I was pregnant, and then when I was nursing. So, some of them happened in pockets, and then some of them happened continuously. And there are definitely times where I was like, I am done with taking injections and I would literally take a three- to six-month break for it.  Because it was one thing I couldn't add to my life at that time, which is kind of ironic that it would keep me on track. And every time I say it out loud, I'm like it's so stupid. But it is where I was. I've been at those different points. Being off of it, the times where I was off of it significantly, I did not have any problems.  

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So, I know I feel very fortunate that that's not—I do not fall into the group of people that have a relapse the second they stop taking their medication. And I know that. And I know I take that advantage and I push it a little bit. But sometimes it's for my mental well-being that I need to not do it. So that's that.

[Healthcare and Treatment: Experiences of Being on Disease Modifying Therapies]

INTERVIEWER: So, with your care, like your medical care team, when you made this decision to stop all your medications, what was their involvement and input in response to that? 

They were not—they were not thrilled. I don't really remember—I don't really remember how it all happened, but I remember being in the hospital because my drug interactions were so severe that I needed to be admitted. And then I remember on, like, day two I was like, this is what taking drugs causes. I'm just not going to take drugs anymore. And I have a feeling—and I guess I could—I can go back through my medical records. But I have a feeling there were some drugs that I had to titrate off of and others that I could just stop altogether. But I think once I explained, “Look, this drug isn't working,” they were like, “OK, well, let's figure out the safe way to get you off of it.”

He put me on Avonex, the one shot a week, and that was okay. I got the normal sickness they say that came with it. But after a while being on that, I took it every Wednesday, and one Saturday morning, my leg just went straight, and I couldn’t do anything with it for about 30 seconds. Of course, that scared me. I didn’t know what was going on. But it went away, so I didn’t think too much of it. But it kept happening on a Saturday. Well, what do I do during the week that’s the same all the time? And that was that shot of Avonex. So, on my own, because I have been told I’m a noncompliant patient, I stopped taking the Avonex, and I didn’t have that happen anymore.