MS Modifying Treatments

INTERVIEWER: When he recommended that you go on Ocrevus®, what factors did you take into consideration about making that decision to start that medication?  

I know, for me, like I said before, I'd looked a lot on social media, and it definitely seemed to be that, again, the people that looked like they were around my age, living my lifestyles, really were liking the IV treatments. There [are] multiple infusion treatments out there, but that really seemed to be kind of the trendier treatment. And then I obviously did my research to back that up too, that Ocrevus® is one of the newest ones. It has all these fantastic results, and honestly, reading into the infusion treatments is a lot of what made me start feeling better about my diagnosis when I officially was doing all my research. So, when he recommended it, I was really excited to try it. Like I said too, I think that twice a year is fantastic for me. I like the freedom of only having to think about it twice a year, and it's only for a couple hours, and it doesn't hurt. You're just sitting in a chair. I would come, I would bring snacks, I'd bring a tablet, I’d watch Netflix, drink some bubblies, and then go home. So, it really, for me, it fits, which is why I also want it to work. And I think it's hard when you don't know if it's going to work or not because it fits my lifestyle so well, but that's just part of MS.

So, the three original medications are all injection-based, which is not the case now. But at that point, I had to be OK with an injection happening. I don't have a fear of needles. It wasn't an issue. But I determined with Avonex©, doing that one time a week worked well for my schedule, my world, my lifestyle, and I could do that.  So, at that point, the Avonex©, it comes in both forms, but it is now in an autoinjector. So literally, I have to do nothing. So, I'm very happy with that, and that has consistently allowed me to stay on a pretty good schedule. And with the variety of medications now, I know my life does not lend for me to take something twice a day at regular intervals, like at 7:00 and then 7:00. There's no way my schedule is soft enough to have that, hard enough to have that kind of rigidity, because I do a lot of things and I keep weird hours sometimes. So, to me, I can do my injection when works for me, and that is really pleasing. And enough of the other things, like the infusion and so forth, have deterred me also because of PML risk. I'm like, well, the Avonex© is working and I'm good and there's no PML risk to that, so why do I want to switch to something that might be, excuse me, a monthly or quarterly injection or infusion, or anything like that? 

It was just part of getting up. Right before I'd eat breakfast, I go in and clean up, and then I do my shots. On Mondays was always this arm, Tuesdays was this arm, Thursday-- or Wednesdays was this leg. Thursday's, Friday, Saturday, and Sunday was in the middle of the belly. So, it was like-- whatever day it was, I know what shot I'm supposed to do so, and I know where it goes.  The arms were the hardest because I don't have a lot of fat on my arms. I got plenty everywhere else, but I don't have it there. And that would hurt some days, and not every day. But once in a while, I wouldn't get enough of a pinch. So, you're not supposed to go into the muscle, you're supposed to just do it in the fatty part. And-- but it was every morning. So, once I started doing it every morning, it was a lot easier, I got to admit, than I thought it was going to be. I did not think that was going to be that easy.

The nurse educator came out, we went over a couple of new tools or tips that I could use, and that's alleviated that problem. So that was something that mentioning to my neurologist was very helpful. And she caused me to make that call. But you can call at any time to have a nurse educator work with you and come out, which I think is really valuable with Avonex©. And there was one time where I had a problem with the needle, and it came apart from the auto injector. And it was 11 o'clock at night on a Saturday, and I called the phone number and left a number on the automated system, and within two minutes I got a phone call back from a nurse educator to walk me through what happened, we'll file a claim on this and see what happened, we'll get you a replacement injection, but you know, X, Y, and Z, we think this, or this did not happen. And that was very helpful. 

And then once Ocrevus® was approved by the FDA, which was-- what, like three years ago, I think? And that's every six months. It's an IV injection every six months-- or IV infusion. And so I switched to that.  And the biggest thing I've noticed with that is it's just more convenient. You know, I go to the doctor-- or go to the hospital and have that infusion for four hours, or whatever it takes, every six months. [um] I haven't had an issue with a reaction to it. But it means I don't have to think about it every day, I don't have to think about rotating injection sites, I don't have to worry about traveling and-- and grabbing or thinking about how I want to bring my injections with me, and getting that stuff every month, and refrigerating it, and everything else. It's just it’s more convenient in that aspect.

From a treatment standpoint, you know when I was starting to think about what treatment I was going to get, it really wasn’t-- it really didn't matter much because there wasn't really an advantage to one over the next other than [INAUDIBLE]. And once they approved oral medications, which they did a few years later, I didn't switch them, which surprised some people, but you know my view was, well-- and I wasn't with this view-- I talked to other scientists and stuff too-- but my view was, well, you know, you're not going to have nearly as much safety data on an oral drug that's just been put out that essentially, does the same thing as an injection, because it's the same kind of drug. It's just a different delivery method, which is much harder because you know, your gut thinks these things are food, and so you have to figure out how to bypass the gut. Right so it’s just -- but it's not been on the market for very long. So obviously, you don't have much safety data. So I want to wait until that all came out. I-- I always said that you know, giving myself an injection wasn't my favorite part of the day, but it's also not the worst experience of my life. I'm not afraid of needles, so I can handle it.  So I'm happy that oral drugs are out for the people that are afraid of needles and not doing MS drugs because of that. But for me, it doesn't make much of a difference. And now, like I said, with the Ocrevus©, it's just a convenience thing more than anything.  It might give more-- it was approved-- I think it's-- it’s well, I know it's the first drug that's been approved for progressive forms of MS. But you know like I said, it was just more a matter of convenience for me anyway. So that's another matter.  

So, I switched to a new medication, Tysabri®, which is what I am currently on, which is amazing. Quality of life wise, totally different. It's a once-a-month infusion. So, it's a little scarier in that you have to get an IV or whatever. But I didn't have to give myself shots three times a week, which was great because that got very old.

Well, when I first was diagnosed, they had four different kinds of shots. And he gave me the one that they most-- they usually start people with relapse remitting out on. And it was the-- you know, the smallest needle. And it wasn't every day. And it wasn't, you know, whatever. So it was kind of ease into this treatment. So he just picked it. And I was like, “OK, whatever,” because I know nothing. And then I heard about this pill that was coming out. And him and I were talking and stuff. And I said, “Well, don't even-- don’t even talk to me about this pill, because while it would be nice not to have take a shot, you know, this pill is brand new. I want to let it be out for a while you know, and see how it does and what the effects are and stuff like that.” You know, and anyway, so I waited probably-- I think it was out for a couple of years. And then I talked to him. And I said, “So, what have you heard on that pill you know? Has it been having any problems? Have they had to recall it or anything like that?” So he's like, “No.” You know, and he goes, “It's actually you know, been proving to be pretty good.” He's like, “Do you want me to switch you to that?” And I said, “Well, I'd prefer that to the shot, sure.” So he just switched me.  

But those kinds of moments where, you know, essentially, the rug is pulled out from underneath, and I had no choice but to face the reality that this MS is really here-- my medical. So it was around that time, I guess, that I saw maybe a neurologist. And I was looking for somebody at that time who could help me with alternative treatment. I hadn’t heard anything that made me particularly hopeful about taking the routes of treatment that were present at that time. There was a different generation of drugs and treatments, and none of them convinced me that the side effects of the, that the difficulties with the side effects weren’t worse or at least as bad as what it was I was dealing with. 

The recommendation was also for the Ocrevus©, which is the medication that I decided to take. 

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 So, for the first infusion, they break up the first dose into two infusions instead of giving you the first dose all at once, and those infusions, I believe, were two weeks apart from each other, and that was just to make sure that your body doesn't have an infusion reaction or react poorly to this new medication. So, I sat in the infusion center, and they asked me some questions about how I've been feeling, and they gave me some Benadryl© and a smaller dose, a much smaller dose of oral steroids, and then kind of let me sit with the Benadryl© and oral steroids for about a half an hour, and then they got the infusion started, and I really didn't feel much at all with it. It was kind of cumbersome because I had to sit in this chair for hours and hours. By the end of the day, I felt pretty tired, and my face had lost a little bit of color. I looked pale when I looked in the mirror. But besides that, I felt pretty fine with the first infusion. I didn't have any reaction at all. At one point in the middle of the session, my head got really itchy, and so I scratched it a little bit. And I'm like, maybe this is coming from the drug. I'm just going to not scratch and hope it goes away, and then it went away. And then the same thing with the next dose that was a couple of weeks later.

The long-term treatment, which was actually very annoying for my [CHUCKLES] quality of life. I did not find it fun. They came in this really just fancy autoinjector, which now that I've given myself a shot with an actual syringe, I realize it just makes a very violent injection process because it's all spring loaded. So, it's sort of nice in that you just press a button, and then it injects you. But it's overengineered to make sure the liquid goes inside of you, so it's just a lot of force. So, I had bruises all over my belly where I did my injections and on my upper hip and back here. It was just, you know, subcutaneous injection is the protocol. And so, they basically take the fatty areas with fewest nerve endings. But it's still big, ugly bruises, having to ice myself for half an hour before every injection three times a week.  

INTERVIEWER: Oh, my gosh.  

--so a huge inconvenience. And you know, no one else my age had to figure out a sharps container and to travel with refrigerated storage when you're anywhere for more than, like, two days at a time because I have to do this three days a week. So that was a big adjustment.  

I mean, I-- I like the Ocrevus©. I like that it's only once every six months. But I absolutely hate the day that you have to go to get it, because you're supposed to hydrate the night before and the day of. Well, then I end up you know, having to change my clothes three and four times, because I can't hold my urine. And it’s like, I hate that. You know, and so I did one time where I didn't hydrate as much. Well, then they had trouble finding my vein that they could put the IV in. So I had said to them, I said, well, here's a note to self. Don't do that again, because we didn't really like that. You know, but it's-- again, when you're doing something-- and I don't know how all these other people do it without wetting themselves. It’s like how can you drink all that stuff up and over a 24-hour period and not wet yourself? You know, and so, of course then-- when that happens, then I need help, because I've got an IV in one arm. And I-- you know-- you don't want to pull it out.  

I would take the pre-filled syringe and put it into an auto injector. So, I would have to secure-- there was that lock. So, I would unsecure the lock, and then I would put the pre-filled syringe in the auto injector and then twist it. And the button that you press is hard, because obviously it has to go.  And so, I did that one, probably for about five or six years. And when I went to an event, they now had a pen. So, the pre-filled syringe is inside the pen, and all you had to do is just press that one button. And I said, OK. Because every time I look at the syringe, I see the needle. And it's like, oh. And so, I said, OK, let me try that. Because that way, I don't have to touch the syringe. I don't have to put it in the injector.  So that's called a Rebidose© pen. So, I started doing it. But then, I was noticing that I would press-- when I put the pen, it was a lot of more pressure in the skin. And there was a louder pop, definitely a louder pop. After I do the injection, I have to rub the area, too. Because as soon as I inject, you can feel the liquid, just right there.  So, I have to massage it, so that I'm, kind of, spreading the medicine around, for about five minutes. And then I always put some lotion, because I don't want the skin to get scarred or any changes. With a Rebidose© pen, I was noticing that it was much deeper. And yeah, I noticed a couple of times where there was a black and blue mark, but I did it with the other one. So, I did the Rebidose© pen. 

I was taking Copaxone© first, which I was giving myself a needle once a day myself. And that wasn't strong enough for me. My eyes went crossed either in March of 2019. And then Dr. [NAME] changed to me to Tysabri©. And it's been much better ever since. 
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And then she put me on the Copaxone© first, which was a lot for me. Because I never thought I would be giving myself a needle every day. And then I had to try to find different spots to put the needle. And it was making my skin sore. It was a lot. So, I did that for-- so that was from September to March. So that was only-- October-- yes, I think I got it in October. I started in October 2018 and that was November, December, January, February, March. So that was only five months. And then I had another relapse with my eyes. My eyes crossed. And then I called her freaking out. I was like, “Oh my god. Like, we're going to have to change this medicine. And we got to change it now. Because it's not working.” So, then we changed it to Tysabri©.  
INTERVIEWER: So how long have you been on the Copaxone©-- or the Tysabri©?  
Since last year. So, a year and a half, right. Since March of 2019. Yes. So, I guess around April 1. Because it was March 19 was when all this happened with my eyes. So, I would say maybe April 1 is when we started with the Tysabri©. So, it's been a year and a half now. 
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Well, I know it helps me a lot now because-- with the change in the medication. The Copaxone©, I think, affected me more in a bad-- not a bad way, but I was more down about it. Because I had to give myself a shot every day. And then when it wasn't working, I was really stressed out about it. But the Tysabri©, I kind of look forward to going to get it. OK, I'm just going to get my medicine. And I look forward to getting it because I feel like it's going to help me get through it. 

So right after I was diagnosed, well, a few months after, I started with Rebif®. And then when I first saw the doctor here in the States when my left arm started tingling, he gave me Tecfidera®, just because I myself made a mistake. He asked me, what medication I had took before, and I remembered something was better and because Rebif® was manufactured by a company that seemed similar. So basically, I forgot. But he gave me a medication. I probably should have continued on Rebif®, but I did not. For my own fault, maybe, because I forgot. 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.  

So, I go to these monthly dinners in our area, where a new drug is introduced or where a doctor will be doing a talk on a specific drug treatment. And as I mentioned, I’ve been with four different drug treatments. So, I know that no treatment is probably going to last me my lifetime, so I’m always open to learning. And I, again, am so grateful. When I was diagnosed in 2008, as I said, there were only a few drug treatments, and they were all injectables. There are like 22 different treatments right now. That’s amazing, really. In 13 years, that’s amazing. And it’s due to advocacy work of people who have gone before me, people who have done clinical trials before me. So, in my eyes, this is huge. I mean, I recently met someone in the last year who did a clinical trial back in like ‘98 on a drug that was my first drug that I was on in 2008.

INTERVIEWER: Wow.

And I looked at her and said, thank you, thank you. You know that drug didn’t work for me long term, but because she was in a clinical trial, that drug came out, and that was the first drug I tried. I mean, to me, that was like monumental.

I mean, for me, seeing the difference of what my life has been like on Tysabri, and I mean even on Rebif, compared to the other people, the older people in my support group, and the sort of traditional sense of what MS means, it's incredibly clear that science is completely-- like, science gets a lot of credit for the fact that I can live a mostly normal life now. I think if I had gotten diagnosed 10 years ago, my life would be very different because the drugs available would have been very different. And so, it's really clear to me that I have a moral obligation to support any sort of science in MS because I'm benefiting from that work already.