Real stories of people taking LISRAYA
Hear how LISRAYA helped people with dermatomyositis find symptom relief and embrace more of what life has to offer.
Individual results may vary
Mary’s Story
Diagnosed with dermatomyositis in 2022
Mary was working actively as a speech pathologist when an itchy rash on her back and neck signaled the first signs of DM. As muscle weakness and fatigue took hold, everyday tasks like loading and unloading the dishwasher became difficult, and her rash led her to cover her skin or stay inside at outdoor gatherings she once looked forward to with family and friends. LISRAYA helped Mary regain strength and confidence, helping her return to the life she loved.
Read more: Patient Stories Read less: Patient StoriesI feel like I’m getting back to my normal self.
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My name is Mary Helen, and I live in San Antonio,
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and I am a speech pathologist by trade.
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The rash
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portion of the disease and how it affected me was
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that the fact that it was so just incredibly
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itchy, that affected my sleep. I was
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just significantly weaker
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and having problems even brushing my teeth,
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holding onto the steering wheel when I was driving.
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Well, when I started the trial, I would say probably the first thing I
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noticed was the rash
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simmering down and
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just being able to maybe have a little bit more energy.
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And change that I noticed right away
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being on the trial was my upper
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extremities. I think I had a lot of rash on my
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elbows and my hands, and that seemed to
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not be as red and as itchy. I have a
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little bit more energy. I can actually lift my arms longer,
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drive the car without resting my arms.
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I think I just felt innately like I have the strength, I have
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the energy. Let me try something that I wasn’t
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able to do a year ago. And the day that I actually did make it through a
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whole 20, 30-minute
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aerobic exercise video, I was like, “Yay, I’m back to
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the
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level that I was.” Well, I think that
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being able to get back and do the things that I normally did,
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it just felt like having your
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personality back and having the person that you
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were back. So it felt awesome.
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My life felt so much more normal. I felt like
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I was just doing the same activities that I’d
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always done. I was able to work. I was able to do
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just everything that I had done. So I was very
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happy about that. I
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felt like a chapter in my life had
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closed, and I was overcoming something that was really significant.
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Yeah, I was just glad to not be on so many medications any longer.
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We went to the Bahamas, and
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I was so excited that, I still did a lot of
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taking care, being in the sun, and watching what I was doing,
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but I was so
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excited that I finally got to do something like that that I had wanted to do for
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such a long time. We had been planning it for probably three or four years,
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so. Well, in that moment of that vacation, I was just like, “This
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is
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just like a dream.” It’s so
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amazing to be here and
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just think about how I had been three years prior,
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and now here I am in a little paradise.
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My family, overall, I feel like
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they did see that it was something that was
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helping me, and then once it was over,
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they were like, “We’re so glad that you went through with
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this and participated in this because you’re back
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to the person that you were.”
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LISRAYA can lower your ability to fight infections.
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Before treatment, test for TB and do blood work.
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Serious infections, cancers, heart attack, stroke, blood clots, and death
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have occurred. Tell your doctor if you’ve had these events, infection, hep
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B or C, smoked, are pregnant, or planning.
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Don’t take if allergic or have an infection.
Tamara’s Story
Diagnosed with dermatomyositis in 2022
After working 32 years as a registered nurse in Texas, muscle weakness from DM forced Tamara to leave the job she loved. She spent days on the couch as simple tasks like combing her hair and brushing her teeth became excruciating. A few months after starting LISRAYA, her muscle pain eased and her skin rash also disappeared. Within three months, she returned to work and was able to rediscover her passion for scuba diving, swimming, and hiking.
Read more: Patient Stories Read less: Patient StoriesI went from somebody who could barely get off a couch to going back to work and being social, being able to do things again.
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My name is Tamara Cooling. I live in New Braunfels, Texas.
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I’m here to talk to you about
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my life with dermatomyositis. My experience before my diagnosis, I
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was working eight hours a day, probably more than that, being able to
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lift weights, do regular activities outside my house, and then
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from that, in less than a month, I was sitting on a couch.
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I couldn’t move. I couldn’t brush my teeth. I couldn’t comb my hair.
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It was hard to get out of my bed. Some of the mentality that was going through my
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mind was, I can’t do my job. I didn’t know how to tell people
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that
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I couldn’t work.
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After I started the drug, I started to notice improvements in my skin within the
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first month.
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Then subsequently, after two months, I started noticing my
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muscles. I started feeling better. I had more longer duration.
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I could start brushing my teeth normally.
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My hair,
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I could comb my hair. And after about three months of being on the drug, I started
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back to work.
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After being on the medication for three months, it was a joy to be back at work.
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Again, I was thankful. I was blessed,
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and
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it’s unexplainable, and because, again, I went from somebody
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who could barely get off a couch to going back to work and being social, being able
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to do things again, and not be embarrassed by
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what I was with the disease. My skin was improving
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within
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that month, the first month of taking the drug. I had the red rash.
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I had it on my face, I had it on my arms, and especially in my hands.
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I started noticing my skin clearing up. The red rash disappeared.
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It went from my face down my neck, started clearing up into my arms
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and ultimately into my hands, and the rash was gone basically in three
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months. I was able to weight lift. I was walking four miles a day, weight
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lifting, doing all my activities that I need to do with work,
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come home, cook, clean, wash clothes, play with my
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dog, feed my birds, do some gardening.
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I got to experience something that I love to do. It was scuba diving.
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It brought a lot of joy, and it brought a lot of confidence back.
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I was able to socialize, finally figure out that I can socialize and be
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myself again. That brought me the most joy, just to be able to do that and to go
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back to hiking, be able to go swimming at the lake, to go
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boating, to be around friends, to cook, to have holidays, and to be a part
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of life again.
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LISRAYA can lower your ability to fight infections.
45
00:04:06 –> 00:04:08
Before treatment, test for TB and do bloodwork.
46
00:04:09 –> 00:04:13
Serious infections, cancers, heart attack, stroke, blood clots, and death have
47
00:04:13 –> 00:04:18
occurred. Tell your doctor if you have these events, infection, Hep B or C, smoked,
48
00:04:18 –> 00:04:22
are pregnant or planning. Don’t take if allergic or have an infection.
Veronica’s Story
Diagnosed with dermatomyositis in 2021
Veronica devoted herself to her family as well as a promising career in IT. But DM brought pain, fatigue, and muscle weakness that forced her to leave her job and miss everyday family moments. With LISRAYA, Veronica was able to regain her strength as well as her confidence. Just a year after starting LISRAYA, she was off steroids and able to celebrate her progress by taking a cruise with her family.
Read more: Patient Stories Read less: Patient StoriesYou don’t realize how important the little things are until you cannot do them. And when you get them back, you appreciate them more.
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My name is Veronica Futura. I live in Michigan, but I’m
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originally from Mexico City. Once I started the trial,
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I don’t have to take more needles anymore.
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And literally, it was three or four days
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that I start feeling, especially the
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fatigue was there,
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but it wasn’t that deep that I couldn’t think.
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It was more like a fatigue, like, “I’m
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tired. I need a break,” maybe. But I didn’t need to take
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a nap anymore. Before, my breaks were taking naps because
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I was so tired. And suddenly, I
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went a week without having to take a nap.
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And then, a week and a half later,
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I noticed that I was able to grab things
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without so much problem. What they
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explained to me is that my muscles get tired, and then your brain
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is telling you to grab the mug.
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But even when your brain is telling you, you don’t have the strength.
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So no more breaking mugs, no more grabbing a
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fork and slip out of my hand. And the other big thing
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was when I was walking,
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my husband would tell me, “We need to go home,” because without me
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noticing, my legs were tired, and I would
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start dragging my feet. So we noticed that we were out
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doing groceries or something,
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and he didn’t have to say, “Hey, let’s go.” I
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wasn’t dragging my feet anymore. So that was a big thing for me
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to have this sense of a little bit more independence.
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Maybe not 100%, but some something was
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coming back to me, some power, like that special
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power. You’re Wonder Woman again a little bit.
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Not totally, but at least just a little.
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That was great. And another improvement that it
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was amazing was my skin. It
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got to a point, actually, I have a picture, and I was
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literally like, I looked like a boxer.
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With my eyes, they were so
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inflammated that my eyes were like this, and my face
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was totally red.
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That one night he got home, and I stay in
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another room, not in our room, in the guest room, because I didn’t want him to see
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me like that. I looked awful. So that was another
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improvement with the medication
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from the clinical trial. When I feel more
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confident,
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I was able to go back to church. I finally
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got enough courage to
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face the world. I call it that way.
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Especially at church, when you get so close to people. Yeah.
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It feel good. It feel like
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I’m pretty again,
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even if you’re not pretty.
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But you can look at the mirror and say, “I like who I am again.”
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Once you are in the clinical trial for a certain amount of time, then we can
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start tapping down the prednisone.
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We got to zero,
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and she was like, “Okay, here comes the big test.
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I’ll see you next month, and let’s hope.
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But if something happens,
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anything that seems like a small flare,
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you contact me right away, and we put you on prednisone again.” So went
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to the next appointment.
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She checked, said, “No, there’s not a sign of a flare.
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So we’re it. You’re out of prednisone.”
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And I was like, “Seriously? And I don’t have to ever go back to it?”
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And from that day until now,
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I haven’t touched prednisone anymore. Yeah, I’m done.
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I’m not taking prednisone anymore. I will never forget Dr.
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Ventura’s face telling me, “We did it. You’re out of prednisone.
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We did it.”
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LISRAYA can lower your ability to fight infections.
72
00:04:08 –> 00:04:11
Before treatment, test for TB and do bloodwork.
73
00:04:11 –> 00:04:15
Serious infections, cancers, heart attack, stroke, blood clots, and
74
00:04:15 –> 00:04:18
death have occurred. Tell your doctor if you’ve had these events, infection,
75
00:04:19 –> 00:04:22
Hep B or C, smoked, are pregnant, or planning.
76
00:04:22 –> 00:04:24
Don’t take if allergic or have an infection.
Glennis’s Story
Diagnosed with dermatomyositis in 2021
Before DM, Glennis lived an active life on her farm in Missouri. But after her disease took hold, inflammation in her throat, arms and legs made it challenging for her to swallow or move. Within months of starting LISRAYA, Glennis regained her strength and was able to resume everyday activities like washing her hair, dressing herself, and playing with her grandkids. She got back to living life on her own terms again.
Read more: Patient Stories Read less: Patient StoriesWith LISRAYA, I could get dressed by myself, play with the grandkids, and get in and out of vehicles.
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My name is Glennis, and I live in Pleasant Hope, Missouri.
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My husband and I have a 62-acre farm, so we farm it.
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We have elderberries and then we have horses.
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And we’ve lived here 28 years, and that’s mainly what we
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do. My symptoms first appeared in 2021.
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I got a sunburn on my chest and my arms. It just kept going on.
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It would never heal, never go away.
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The next thing that came up was sores in my mouth.
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My mouth got really red, and I couldn’t eat.
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Everything would burn really bad.
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Then the muscle weakness started, especially in the tops of my legs, my arms.
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I got to the point that I couldn’t swallow.
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And one of the hardest things I had to deal with was my hands, how my fingers
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would get so red and so tender that at one point, I was having
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to wear gloves, just white cotton gloves, almost all the time
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because they hurt so bad just bumping them.
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I started noticing a change in my condition after I started the drug trial, and
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mainly the redness. Well, all of it, really.
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It started, the muscle weakness got better.
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The redness went away. The puffiness went away.
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My hands was still, at that point, the biggest issues that I was having.
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So I started noticing real pretty soon that it was going in the right direction.
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We were heading in the right direction of getting over the symptoms.
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It didn’t take very long, maybe a couple of months, that everything started really
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calming down, and I could get back to functioning at closer to normal.
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But my hands
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were not beet red anymore. The soreness, the cuticle part of it
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was finally not hurting, and I could get by without wearing gloves.
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That was a blessing when I could stop wearing gloves all the time.
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The muscle weakness started going away in my arms. I could get dressed by myself.
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I could wash my hair without propping my elbows on the side of the wall.
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Just little things like that, and playing with the grandkids, getting in and out of
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vehicles, just getting in and out of bed was a big thing.
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So it was a good thing. The drug really helped with that.
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And the drug also, the main thing, too, was my throat.
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That’s where we saw a big improvement is once I started being able to swallow,
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being able to eat. You get your independence back when you can just do what you
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want to do. So that was nice. When you don’t have to worry
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about someone helping you. I love my family, and they
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were there, but to know I didn’t have to rely on them and
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to know that I was past the point of them constantly worrying
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about was I going to fall and not be able to get up somewhere or just
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simple walking around, like going out to feed the dogs.
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Am I going to fall down a step or something? That was a big relief.
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Learned a lot about yourself, that you can trust and rely on others.
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I know I can rely on my family, my friends, that
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they’re there to take care of me. But I also know I’m strong enough that I can do
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it. I can get through it. I did.
49
00:04:02 –> 00:04:04
LISRAYA can lower your ability to fight infections.
50
00:04:05 –> 00:04:07
Before treatment, test for TB and do blood work.
51
00:04:08 –> 00:04:12
Serious infections, cancers, heart attack, stroke, blood clots, and death have
52
00:04:12 –> 00:04:16
occurred. Tell your doctor if you’ve had these events, infection, Hep B or C,
53
00:04:17 –> 00:04:21
smoked, are pregnant or planning. Don’t take if allergic or have an infection.
Candice’s Story
Diagnosed with dermatomyositis in 2017
Candice was a healthy, active social worker and mom when a DM diagnosis turned her life upside down. She cycled through treatments for nearly a decade without finding relief from her full-body rashes and muscle weakness. After starting LISRAYA, the rashes across her body, including on her neck and around her eyes, began to clear, restoring her appearance and her confidence. Her strength also returned, allowing her to get back to the gym and reclaim her active, independent lifestyle.
Read more: Patient Stories Read less: Patient StoriesI was able to regain my sense of independence and reintegrate into my typical lifestyle and activities of daily living.
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I am Candice. I live in Park Forest, Illinois, which is a suburb that’s 20
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miles south of Chicago. Born and raised in Chicago all my life.
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I’m 46 years old. My symptoms first began with a simple rash on my
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thigh burns, really simple, didn’t think much about it, and I just began to get
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worse and worse, going down and down and down, to the point where I had a complete
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and total shutdown. Being on multiple prescriptions, trying to manage the
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symptoms was extremely frustrating because nothing worked.
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When I tell you nothing worked, my skin was on fire. It was red.
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85% of my body was covered in red, angry rashes from my face
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all the way down to my calves, completely covered.
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I was in a clinical trial for a DM treatment.
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When I was in the trial, I began to notice a subtle change.
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It didn’t come all of a sudden, but gradually.
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I just began to notice that my arms started clearing up, my thighs began to
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clear up. My whole entire back once was like sandpaper.
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It started to resume its texture and smoothness.
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My partner, he began to notice, like, “No, I think it’s lightening up a little
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bit.” And a lot of times, I was sensitive to the touch, so if somebody touched me,
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I would immediately jump, and he was noticing that I was just more relaxed and
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could just take physical touch a lot better.
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When
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I stayed diligent taking the trial drug, and I began to notice significant change,
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it was literally like a weight was being lifted off of me. Literally.
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It was almost like if you’ve been in a bad dream,
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and you wake up and you realize and like, “Oh, it was just a dream.
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I’m okay.” So I began to come back to a sense of peace and feeling like, you know
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what? This is going to be okay. This drug is working, and it’s going to be okay.
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So one piece that have improved for sure with the trial drug was no more cuts.
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No more sores, no more cuts. I had sores all on my neck, sores on my
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eyelids, so the sores have completely been alleviated. Completely.
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And that’s a huge blessing because that was really tough to deal with.
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After getting on the trial drug, I slowly but surely started to realize that my
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strength was coming back and that I just didn’t need as much assistance with the
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activities of my daily life. It felt amazing to be less dependent on
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others for my basic needs because as much as they love me, I am a
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strong woman who wants to be independent and take care of myself.
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So it felt amazing to regain my sense of strength and sense of self back.
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I’m coming out on the other side, and after being on this trial drug, it has given
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me a renewed sense that there is life after.
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And even though I’ve been in a ring boxing DM, that I’m
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not defeated. I’m not defeated, and there’s life after.
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And even though life looks a little different for me now,
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I have hope. I have hope that it’s going to get better. I really do believe that.
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LISRAYA can lower your ability to fight infections.
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Before treatment, test for TB and do blood work.
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Serious infections, cancers, heart attack, stroke, blood clots, and death have
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occurred. Tell your doctor if you’ve had these events, infection, Hep B or C,
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smoked, are pregnant or planning. Don’t take if allergic or have an infection.
Kristin’s Story
Diagnosed with dermatomyositis in 2002
Kristin lived an active life in Arizona, married with two small kids and a full-time job. Then, DM symptoms hit: a severe rash and muscle weakness that, before long, left her unable to walk, dress herself, or even open a bottle of water. For years, prednisone kept her symptoms stable but took a lasting toll on her body. A few months after starting LISRAYA, her rash and muscle pain were gone, and she was able to completely stop using steroids. She began exercising again and saw her independence return. She’s since taken up a new passion, competitive donkey racing, something she had never imagined attempting before.
Read more: Patient Stories Read less: Patient StoriesI knew LISRAYA was working when the rash on my face, chest, and hands completely went away.
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My name is Kristin Walker, and I live in San Tan Valley, Arizona.
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When DM symptoms first started, I started getting a bad rash on my body.
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I started feeling muscle weakness, and I slowly dropped down to
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82 pounds over the course of a year. I just started losing all muscle mass.
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I wasn’t able to do anything. Walking, I would just be walking and fall, and I
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couldn’t help myself up. When you’re dropping that much weight, and you look like a
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skeleton, and you’ve got this rash all over your body, and nobody knows what’s
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going on with you, it’s kind of scary.
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My doctor primarily put me on a prednisone treatment instead of methotrexate
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because it just wasn’t working for me and my body.
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And with prednisone, we started at 60 milligrams, and I was on that for six years.
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I do a DEXA scan every year for bone loss.
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I have osteoporosis in my hips, osteoarthritis, onset of arthritis, all
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due to the long-term prednisone use.
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I joined the VALOR study for adults with DM. I just wanted help.
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I didn’t want to be on prednisone. That was my reason for joining.
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And then within a month of taking the study drug, I felt like myself.
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Like I had never had dermatomyositis in my life. It was amazing. It was awesome.
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I hadn’t felt that good in years. It was a day and night difference,
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completely day and night difference. And people were like, “Are you sure?
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You’re just not making this up? It’s just not in your mind?” I said, “If you
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understood how my body would feel
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prior to taking the study drug, even with the IVIGs, even with nothing, and
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compared to what I have now, yes, it’s working.
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I feel amazing.” And so I was able to pick up a pencil and write.
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I was able to open up a water bottle myself, brush my hair.
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I started to be able to dress myself again. My rash went away.
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I had no calluses on my fingers, no nodules.
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My chest started turning to a normal skin color again.
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My elbows didn’t have these knots on them anymore. My eyelid rash went away.
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I looked normal. The emotions that I was going through when I was experiencing
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the effects of the drug were,
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I was happy. I was excited. I was like, “This is working.”
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The part that made me happy was when I was able to go to the gym and not pick up a
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three-pound weight and not be able to pick it up.
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I was able to pick up a 10-pound weight, and then a 15-pound weight, and then a
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45-pound weight, and you could slowly start to see my muscle definition again.
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One thing that I started doing in the last two years is I found this love of
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donkeys, and I have competed in– this year we’ve done four
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donkey races where I race a donkey, and I run with donkeys, and I have to yank
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them, I have to pull them, they pull me. I have no fear of falling.
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But I started doing donkey races, and you’re doing hills and mountains and trails,
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and you’re by yourself, and it’s just you and this animal that’s a stubborn mule.
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And I love it. That’s my new found thing that I’ve enjoyed doing, and
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started doing that. It was just exciting and fun, and
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everything’s so crazy, but I love doing it.
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LISRAYA can lower your ability to fight infections.
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00:03:39 –> 00:03:42
Before treatment, test for TB and do blood work.
49
00:03:42 –> 00:03:47
Serious infections, cancers, heart attack, stroke, blood clots, and death have
50
00:03:47 –> 00:03:51
occurred. Tell your doctor if you’ve had these events, infection, Hep B or C,
51
00:03:51 –> 00:03:55
smoked, are pregnant, or planning. Don’t take if allergic or have an infection.
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Candice’s experience taking LISRAYA
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