A question for the Multiple Sclerosis Community

Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?

Answers from the Community

When I was first diagnosed with multiple sclerosis, I had started one medication that did not agree with me, and I wound up in a relapse a year later. Since then, I have tried three more, and so the one I am currently on is Rituxan, which is off-label use for multiple sclerosis. But it is an infusion every six months. So far it seems to be working for me in that the schedule is convenient and also that I don’t have side effects from it. I have had some more positive effects where I do have a little bit more energy than without it. At this point, I can’t look at any of the pill options because all the other interferons as they are not as powerful as the infusions.

I’m currently taking Ocrelizumab for my multiple sclerosis. I’ve been taking it since September of last year, so almost one year. I have a low white count, white cell count, and that’s why my doctor decided that this would be a worthwhile medication for me to try. So far I’m not sure if it’s working or not. I guess time will tell and MRIs will tell.

I’m currently on Rituxin or Rituximab. The doctor and I decided on it because my MS got so bad and I had refused treatment for years, but when it finally got bad enough, I decided, hey, I need medication. The doctor decided, hey, you can do these types of medications and I decided Rituximab is cheaper than Ocrevus, or however you pronounce it, so I went with the $30,000 one rather than the $60,000 one. Yeah. That’s what I’m on.

The medical treatment that I take for multiple sclerosis is Lemtrada. This medication was reviewed by my doctor, my family, myself. And that’s how we decided that this medication would be something that could possibly help me.

I manage it by medications, lots of rest, taking care of my health. Things like eating well, drinking enough, reducing stress. And the way that I’ve adjusted over the years is based on 24 years of having this condition, looking at what works and what doesn’t work. And I make my decisions with input from my doctor but also based on how I feel and my own research that I make my own decisions.

My wife is not under any treatment at the moment. She’s been treated with four different things, I do believe, for MS, and none of them worked. Four different pills/shots. She’s been on different shots and none of them worked. So right now she’s just handling it the best she can without treatment, which is not going well. But until her insurance covers something else, her insurance has turned down on the last medications her doctor wanted to prescribe her. One was an infusion at the hospital every three or six months, and another one was an in-home infusion. I believe that one was every six months by a nurse or something. And yes, they were all turned down. So she’s doing the best she can, which is not going well.

I take Ocrevus right now for my MS. I was taking Betaseron for 20 years maybe, no, about 10 years, 15 years. I was taking that. We decided to go to Ocrevus because it’s supposed to slow down the progression. So, that’s what I do.

So first diagnosed, it took a few months to even get on anything. I was put on AVONEX, So after maybe six months, a year, went to Tecfidera. And my lesions are stable, so life is good right now.

I am currently taking Gilenya to manage my MS. I have taken about five different drugs. I started with Avonex and Copaxone, and then I went to Rebif, which I really didn’t like, the side effects were too much. So I went, switched to oral Tecfidera, but then I started to see a decline. Then, I switched to Gilenya, and I was also thinking about taking or getting infusions from Ocrevus. But when I talked to my neurologist, she said I can’t really do both, because it’s like $12,000 for Ocrevus. So I’m still just taking the Gilenya. She subscribed for me to go to see a physical therapist to help with my walking, but I can’t really go anywhere right now because of COVID.

My main medication deals with antidepressants to keep me from thinking about the fact that I can’t participate with my husband and children. I take muscle relaxers to keep the tremors away, painkillers for the pain. I didn’t want to do all of some of the heavier medications for multiple sclerosis, because of the side effects of it and our fear of daily life. Just kind of learned to live with it, and like a lot of that was my choice.

I am currently on the infusion Ocrevus. I’ve been on it… This month, it’ll be two years. And before that, I was on the once-a-day pill, Aubagio, and I felt that wasn’t helping my MS to stay stable. I was still having relapses and flares. And I talked to my neurologist and I wanted to go on… I believe it was Gilenya or Tecfidera, one of those two. And she said that she wouldn’t agree with that because it elevates the liver enzymes and my liver enzymes were elevated. She suggested that I try Ocrevus and to do the research on it. She gave me pamphlets on it and I could go to the website, and I in turn agreed to go on the infusion and it’s helped me basically to keep my MS stable. I’m thankful for that.

I think when it just comes to medical treatments, I think, the only thing you can really do is be there and be supportive. It’s more of I think her choosing her treatments, but I’m there to help. I’ve researched things like that as well just as a support system.

I manage it with treatment recommended by my doctor. I just went with what he thought was best for the type of MS that I have.

We handled the approach of my MS, different ways. We first tried Tecfidera. That didn’t work good, at first. So it worked for six months and I had issues with it. Then we tried Tysabri. That worked for a year, then it stopped working. After that, we ended up… I went a year without taking no medicine and I felt good, and I thought I felt good about it without taking no medicine. But then when I went back after that year, well, I had a lot of stress going on, too, but then I had another lesion, so we ended with Aubagio. That caused more issues, so now I’m on Ocrevus. And we came up with the treatment by just sitting down, going through… She gave me the option of choosing my last two. But in between, I had to decide my risk I wanted to take because she had just…Brilinta, but I didn’t want to risk, because of the heart issues and stuff, and I already had some issues with my heart. Aubagio, my insurance wouldn’t cover Ocrevus, so I had to try something else. But most of the time she would talk to me, give me the option of deciding what I wanted. But as a praying and asking God to give me strength to choose which medicine that I really wanted, that outweigh the risk factors, we came up with medicine that was best, or I ain’t going to say it was best, but we felt like was the best option at that moment in time. So we just try whatever we seen that feel like the best option that is good for me. And I tried to manage my condition by resting when possible, doing what the doctors say, but I’m not that type to just sit around and rest. So I tried to get up and do what I need to do, and at the same time, deal with the pain after it’s all over with. But the best of all, I just take day by day and do what I have to do.

How I manage my condition. I’ve been diagnosed for 19 years and I’ve been on five MS therapies. Currently, I am also on a therapy that handles my RA because I have both conditions. My rheumatologist recommended that I tried this one infusion because it works for both conditions. So I’ve been doing the infusions. And like I had said earlier, I’m trying to keep the therapy going for managing my depression and I’m trying to stay cool, to not have any problems with the heat. And my doctors, they teamed up together to try to find one medicine that can treat both of my conditions and I trust them in their decisions for what I should do. Thank you.