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Nadejda’s First Days of Diagnosis

NADEJDA’S FIRST DAYS OF DIAGNOSIS

When I found out I had multiple sclerosis, I was very neutral. Honestly, I think this was because of two things: I was super busy finishing up a show I was in, and I didn’t know enough about MS to really know what having it meant.

I remember thinking, “Ohmygosh, will other people know from looking at me?” I know now that I wasn’t alone in not knowing much about MS. When I ask someone if they know what MS is, most say “no.” Over the last six years, I have grown so much — I’m not just comfortable telling my story and explaining what MS is, I want to share.

Right before I found out I had MS, I was getting ice cream with my mom. I got home, my doctor called and, bam, I had MS. We went right away to see what the MRI showed. The next day I saw a neurologist. I felt like I was in a whirlwind: I saw more doctors, got more opinions, went on steroids, had another relapse, and so on. I still felt numb in terms of my diagnosis. After three months of asking the same questions, I was burned out. One day, after giving myself a shot, I broke down and cried. All the emotions finally came out, and I felt relieved. It took me some time to fully process everything. It felt like I was getting thrown one curveball after another.

 I didn't know enough about MS to really know what having it meant. I remember thinking, "Ohmygosh, will other people know from looking at me? – a quote from NADEJDA

I didn’t tell anyone I had MS until about a month after I felt comfortable being “sure” of the diagnosis. I remember I cried telling a group of my friends. Sharing something so personal with friends who cared about me was hard, but therapeutic. Around two months after my diagnosis I joined a support group for newly diagnosed young adults. To this day, I still talk to the members. That was one of the best things I could have done, to meet others like me. It’s hard having an invisible illness where I get a lot of “Oh, but you don’t look sick.” It was nice to know I wasn’t alone.

I wish I could go back and tell myself that those who love and care about me will support me with my diagnosis. That it’s okay to share it. I also would tell my old self that not everyone is ready to hear about it, and it’s okay if they didn’t receive the news like I thought they would. I am built for this illness, but others might not have the same perspective as me.

 It took me some time to fully process everything. It felt like I was getting thrown one curveball after another. – a quote from NADEJDA

My parents, friends, family, and support group helped me keep moving forward and keep fighting. I learned I had to be my own advocate no matter who was in my corner. I am my most important defender and need to keep that in mind. I’ve learned things about my MS that I really could only learn from experience, much to my disappointment. But I adapt. I know that it is okay to say “no,” and I cannot stress that enough. I like to do everything, so it was hard to adjust but very important. Choosing what is most important for me in that moment has become a priority and something to work on.

Bottom line: MS didn’t stop me. It might have altered a few things to my dislike, but I keep pushing. We’ll always come across an obstacle or hurdle, but we are built tough and will overcome these challenges.


See more of Nadejda’s stories

Important Safety Information & Indications

What is OCREVUS?

OCREVUS is a prescription medicine used to treat:

  • Relapsing forms of multiple sclerosis (MS), to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease, in adults
  • Primary progressive MS, in adults.

It is not known if OCREVUS is safe and effective in children.

Who should not receive OCREVUS?

Do not receive OCREVUS if you have an active hepatitis B virus (HBV) infection.

Do not receive OCREVUS if you have had a life-threatening allergic reaction to OCREVUS. Tell your healthcare provider if you have had an allergic reaction to OCREVUS or any of its ingredients in the past.

What is the most important information I should know about OCREVUS?

OCREVUS can cause serious side effects, including:

  • Infusion reactions: Infusion reactions are a common side effect of OCREVUS, which can be serious and may require you to be hospitalized. You will be monitored during your infusion and for at least 1 hour after each infusion of OCREVUS for signs and symptoms of an infusion reaction. Tell your healthcare provider or nurse if you get any of these symptoms:
    • itchy skin
    • rash
    • hives
    • tiredness
    • coughing or wheezing
    • trouble breathing
    • throat irritation or pain
    • feeling faint
    • fever
    • redness on your face (flushing)
    • nausea
    • headache
    • swelling of the throat
    • dizziness
    • shortness of breath
    • fatigue
    • fast heart beat

These infusion reactions can happen for up to 24 hours after your infusion. It is important that you call your healthcare provider right away if you get any of the signs or symptoms listed above after each infusion. If you get infusion reactions, your healthcare provider may need to stop or slow down the rate of your infusion.

  • Infection:
    • OCREVUS increases your risk of getting upper respiratory tract infections, lower respiratory tract infections, skin infections, and herpes infections. Infections are a common side effect, which can be serious. Tell your healthcare provider if you have an infection or have any of the following signs of infection including fever, chills, or a cough that does not go away. Signs of herpes include cold sores, shingles, genital sores, skin rash, pain, and itching. Signs of more serious herpes infection include: changes in vision, eye redness or eye pain, severe or persistent headache, stiff neck, and confusion. Signs of infection can happen during treatment or after you have received your last dose of OCREVUS. Tell your healthcare provider right away if you have an infection. Your healthcare provider should delay your treatment with OCREVUS until your infection is gone.
    • Hepatitis B virus (HBV) reactivation: Before starting treatment with OCREVUS, your healthcare provider will do blood tests to check for hepatitis B viral infection. If you have ever had hepatitis B virus infection, the hepatitis B virus may become active again during or after treatment with OCREVUS. Hepatitis B virus becoming active again (called reactivation) may cause serious liver problems including liver failure or death. Your healthcare provider will monitor you if you are at risk for hepatitis B virus reactivation during treatment and after you stop receiving OCREVUS.
    • Weakened immune system: OCREVUS taken before or after other medicines that weaken the immune system could increase your risk of getting infections.
  • Progressive Multifocal Leukoencephalopathy (PML): PML is a rare brain infection that usually leads to death or severe disability, and has been reported with OCREVUS. Symptoms of PML get worse over days to weeks. It is important that you call your healthcare provider right away if you have any new or worsening neurologic signs or symptoms that have lasted several days, including problems with:
    • thinking        
    • eyesight
    • strength
    • balance
    • weakness on 1 side of your body
    • using your arms or legs
  • Decreased immunoglobulins: OCREVUS may cause a decrease in some types of immunoglobulins. Your healthcare provider will do blood tests to check your blood immunoglobulin levels.

Before receiving OCREVUS, tell your healthcare provider about all of your medical conditions, including if you:

  • have ever taken, take, or plan to take medicines that affect your immune system, or other treatments for MS.
  • have ever had hepatitis B or are a carrier of the hepatitis B virus.
  • have a history of inflammatory bowel disease or colitis.
  • have had a recent vaccination or are scheduled to receive any vaccinations. 
    • You should receive any required ‘live’ or ‘live-attenuated’ vaccines at least 4 weeks before you start treatment with OCREVUS. You should not receive ‘live’ or ‘live attenuated’ vaccines while you are being treated with OCREVUS and until your healthcare provider tells you that your immune system is no longer weakened.
    • When possible, you should receive any ‘non-live’ vaccines at least 2 weeks before you start treatment with OCREVUS. If you would like to receive any non-live (inactivated) vaccines, including the seasonal flu vaccine, while you are being treated with OCREVUS, talk to your healthcare provider.
    • If you have a baby and you received OCREVUS during your pregnancy, it is important to tell your baby’s healthcare provider about receiving OCREVUS so they can decide when your baby should be vaccinated.
  • are pregnant, think that you might be pregnant, or plan to become pregnant. It is not known if OCREVUS will harm your unborn baby. You should use birth control (contraception) during treatment with OCREVUS and for 6 months after your last infusion of OCREVUS. Talk with your healthcare provider about what birth control method is right for you during this time.
    • Pregnancy Registry. There is a pregnancy registry for women who take OCREVUS during pregnancy. If you become pregnant while receiving OCREVUS, tell your healthcare provider right away. Talk to your healthcare provider about registering with the OCREVUS Pregnancy Registry. The purpose of this registry is to collect information about your health and your baby’s health. Your healthcare provider can enroll you in this registry by calling 1-833-872-4370 or visiting www.ocrevuspregnancyregistry.com.
  • are breastfeeding or plan to breastfeed. It is not known if OCREVUS passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you take OCREVUS.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What are the possible side effects of OCREVUS?

OCREVUS may cause serious side effects, including:

  • Risk of cancers (malignancies) including breast cancer. Follow your healthcare provider’s instructions about standard screening guidelines for breast cancer.
  • Inflammation of the colon, or colitis: Tell your healthcare provider if you have any symptoms of colitis, such as:
    • Diarrhea (loose stools) or more frequent bowel movements than usual
    • Stools that are black, tarry, sticky or have blood or mucus
    • Severe stomach-area (abdomen) pain or tenderness

These are not all the possible side effects of OCREVUS.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to Genentech at (888) 835-2555.

For more information, go to www.OCREVUS.com or call 1-844-627-3887.

Please see additional Important Safety Information throughout and click here for full Prescribing Information and Medication Guide.

    • OCREVUS Prescribing Information. Genentech, Inc. 2016.

      OCREVUS Prescribing Information. Genentech, Inc. 2016.