This is Rachel’s story; not all patients respond to therapy. Individual results and experiences may vary.
Please see the full Prescribing Information and Medication Guide for Soliris, including Boxed WARNING regarding serious and life-threatening meningococcal infections.

REAL STORIES

Rachel’s gMG story

My gMG journey began in 1987. I grew up in a military family and spent most of my childhood moving up and down the Pacific Coast from Southern California to Washington State. My mom was “Super Mom,” taking care of me and my 4 younger siblings while my stepdad was away for months at a time as a sailor in the Navy. It was a happy childhood filled with making new friends in each new town.

Early signs, early on

When I was 12 years old, we were living in Washington State. I loved hiking, riding my bike, and playing sports. One day, I was climbing the stairs in school when I fell backwards. My legs were too weak, and I missed the next step. I was so embarrassed, and it was absolutely horrifying because middle school is hard. Soon, I also became afraid to climb the stairs on the school bus. I was terrified that I would step up and my legs would not be strong enough to pull myself up the bus stairs or if I was coming down the bus stairs, that I would just completely collapse.

I had other symptoms, too. I couldn’t raise my arms to brush my hair. I fatigued quickly and couldn’t babysit my little sisters and brother. What was frustrating is that at times people believed that I was just “being a teenager” and didn’t WANT to do these everyday activities.

A few months later, after I turned 13, my mother took me to a neurologist who diagnosed me with generalized Myasthenia Gravis (gMG). I was too young to realize the impact this would have on my life, and so I didn’t try to learn too much about the disease. As a teenager, I didn’t want to be “different” than my peers, so I kept my illness a secret. There were times where I would be out on a beach all day with my youth group and in the ER that evening due to breathing problems. I wouldn’t tell anyone other than my family. Hiding my gMG was sometimes as exhausting as the disease itself.

Struggling into adulthood

My early adult life was filled with hardship. I attended the local community college, but in my twenties I had several hospitalizations due to crisis or gMG symptoms. I had to drop out of college due to my absence and fatigue. And yet, I still didn’t share my diagnosis or talk about my experience with anyone. I felt alone and afraid. Throughout this struggle, there were still moments of great joy: I married my high school sweetheart, and there were also 2 very significant rays of light—the birth of my 2 boys. I cherished the good days where I could take care of my babies on my own, but on days where I couldn’t get out of bed, I was grateful to have family to help. Hospitalizations continued, and it was heartbreaking to know my babies would ask, “Where’s momma?” and not understand why I wasn’t home with them. I was frustrated and felt like a failure as a mother.

Changing perspective

I knew at this point that I couldn’t do it on my own anymore. When I couldn’t find any local support groups, I decided to start one. We were a small chapter, but being able to connect with other gMG patients and caregivers strengthened my soul and gave me a greater purpose. It was these friends that encouraged me to enter the Mrs. Arizona pageant. And it was through this work that I realized that sharing my story not only reduced my feelings of isolation but could help others as well. I often wonder how my life would have been different if I had built my team of supporters earlier, in my teenage and college years, but I wasn’t open to it at the time.

Although these support groups kept my spirits up, managing my gMG was still a challenge. During this time, I followed the progress of research of new drugs for gMG, in particular the Soliris clinical trial. When I found out that Soliris was approved by the FDA, I went to my doctor and advocated for myself—if it was right for me, I wanted to try it. I have anti-AChR Ab+ gMG so he agreed we should give it a shot.

I had my meningococcal vaccinations before I received my first treatment 2 weeks later, in March 2018. My doctor explained to me that Soliris increases my chance of getting serious and life-threatening meningococcal infections. Meningococcal infections have occurred with patients taking Soliris and may quickly become life-threatening and cause death if not recognized and treated early. My doctor explained that meningococcal vaccines reduce the risk of meningococcal infection but do not prevent all meningococcal infections. I was advised to call my doctor or get emergency medical care right away if I get any signs and symptoms of a meningococcal infection like headache with nausea or vomiting, headache and fever, headache with a stiff neck or stiff back, fever, fever and a rash, confusion, muscle aches with flu-like symptoms, or if my eyes are sensitive to light.

My infusion was done at a local hospital and took about 35 minutes. They kept me for an hour to monitor me for serious infusion-related reactions, which can happen during the Soliris infusion. After the initial 5 weeks of treatment, I continue to have my infusion every other week as part of my healthcare routine. I have experienced some slight nausea, though the most common side effects of Soliris are muscle and joint pain, also referred to as musculoskeletal pain.

Serious infusion-related reactions can happen during your Soliris infusion. Tell your doctor or nurse right away if you get any of these symptoms during your Soliris infusion: chest pain; trouble breathing or shortness of breath; swelling of your face, tongue, or throat; feel faint or pass out. If you have an infusion-related reaction to Soliris, your doctor may need to infuse Soliris more slowly, or stop Soliris. Please see additional Important Safety Information for Soliris, including Boxed WARNING regarding serious and life-threatening meningococcal infections, below.

 

Paving the road ahead

Since then, I feel good and hopeful. I am looking forward to tomorrow. I am able to spend time with my boys, and I can keep up with them. I am starting on long-term projects that I have been thinking about for many years, including getting my master’s degree. And, I am continuing to share my story, to talk to those in my support group about my experience, and to draw strength from our shared experience.

The question that I am asked most frequently is, “How do you still have so much joy?” I depend on my faith, my family and friends, and my support group. My motto is that if you wake up this morning and it is a bad day, there is always tomorrow. Stay hopeful!

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IMPORTANT SAFETY INFORMATION INCLUDING BOXED WARNING

SOLIRIS is a medicine that affects your immune system and can lower the ability of your immune system to fight infections.

  • SOLIRIS increases your chance of getting serious and life-threatening meningococcal infections that may quickly become life-threatening and cause death if not recognized and treated early.
  1. You must receive meningococcal vaccines at least 2 weeks before your first dose of SOLIRIS if you are not vaccinated.
  2. If your doctor decided that urgent treatment with SOLIRIS is needed, you should receive meningococcal vaccination as soon as possible.
  3. If you have not been vaccinated and SOLIRIS therapy must be initiated immediately, you should also receive 2 weeks of antibiotics with your vaccinations.
  4. If you had a meningococcal vaccine in the past, you might need additional vaccination. Your doctor will decide if you need additional vaccination.
  5. Meningococcal vaccines reduce but do not prevent all meningococcal infections. Call your doctor or get emergency medical care right away if you get any of these signs and symptoms of a meningococcal infection: headache with nausea or vomiting, headache and fever, headache with a stiff neck or stiff back, fever, fever and a rash, confusion, muscle aches with flu-like symptoms, and eyes sensitive to light.

Your doctor will give you a Patient Safety Card about the risk of meningococcal infection. Carry it with you at all times during treatment and for 3 months after your last SOLIRIS dose. It is important to show this card to any doctor or nurse to help them diagnose and treat you quickly.

SOLIRIS is only available through a program called the SOLIRIS REMS. Before you can receive SOLIRIS, your doctor must enroll in the SOLIRIS REMS program; counsel you about the risk of meningococcal infection; give you information and a Patient Safety Card about the symptoms and your risk of meningococcal infection (as discussed above); and make sure that you are vaccinated with the meningococcal vaccine and, if needed, get revaccinated with the meningococcal vaccine. Ask your doctor if you are not sure if you need to be revaccinated.

SOLIRIS may also increase the risk of other types of serious infections. Certain people may be at risk of serious infections with gonorrhea. Certain fungal infections (Aspergillus) may occur if you take SOLIRIS and have a weak immune system or a low white blood cell count.

Who should not receive SOLIRIS?

Do not receive SOLIRIS if you have a meningococcal infection or have not been vaccinated against meningitis infection unless your doctor decides that urgent treatment with SOLIRIS is needed.

Before you receive SOLIRIS, tell your doctor about all of your medical conditions, including if you: have an infection or fever, are pregnant or plan to become pregnant, and are breastfeeding or plan to breastfeed. It is not known if SOLIRIS will harm your unborn baby or if it passes into your breast milk.

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements which could affect your treatment. It is important that you have all recommended vaccinations before you start SOLIRIS, receive 2 weeks of antibiotics if you immediately start SOLIRIS, and stay up-to-date with all recommended vaccinations during treatment with SOLIRIS.

What are the possible side effects of SOLIRIS?

SOLIRIS can cause serious side effects including serious infusion-related reactions. Tell your doctor or nurse right away if you get any of these symptoms during your SOLIRIS infusion: chest pain; trouble breathing or shortness of breath; swelling of your face, tongue, or throat; and feel faint or pass out. If you have an infusion-related reaction to SOLIRIS, your doctor may need to infuse SOLIRIS more slowly, or stop SOLIRIS.

The most common side effects in people with gMG treated with SOLIRIS include: muscle and joint (musculoskeletal) pain.

Tell your doctor about any side effect that bothers you or that does not go away. These are not all the possible side effects of SOLIRIS. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch, or call 1-800-FDA-1088.

INDICATION
What is SOLIRIS?

SOLIRIS is a prescription medicine used to treat adults with a disease called generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody positive. It is not known if SOLIRIS is safe and effective in children with gMG.

Please see the full Prescribing Information and Medication Guide for SOLIRIS, including Boxed WARNING regarding serious and life-threatening meningococcal infections.

IMPORTANT SAFETY INFORMATION INCLUDING BOXED WARNING

SOLIRIS is a medicine that affects your immune system and can lower the ability of your immune system to fight infections.

  • SOLIRIS increases your chance of getting serious and life-threatening meningococcal infections that may quickly become life-threatening and cause death if not recognized and treated early.
  1. You must receive meningococcal vaccines at least 2 weeks before your first dose of SOLIRIS if you are not vaccinated.
  2. If your doctor decided that urgent treatment with SOLIRIS is needed, you should receive meningococcal vaccination as soon as possible.
  3. If you have not been vaccinated and SOLIRIS therapy must be initiated immediately, you should also receive 2 weeks of antibiotics with your vaccinations.
  4. If you had a meningococcal vaccine in the past, you might need additional vaccination. Your doctor will decide if you need additional vaccination.
  5. Meningococcal vaccines reduce but do not prevent all meningococcal infections. Call your doctor or get emergency medical care right away if you get any of these signs and symptoms of a meningococcal infection: headache with nausea or vomiting, headache and fever, headache with a stiff neck or stiff back, fever, fever and a rash, confusion, muscle aches with flu-like symptoms, and eyes sensitive to light.

Your doctor will give you a Patient Safety Card about the risk of meningococcal infection. Carry it with you at all times during treatment and for 3 months after your last SOLIRIS dose. It is important to show this card to any doctor or nurse to help them diagnose and treat you quickly.

SOLIRIS is only available through a program called the SOLIRIS REMS. Before you can receive SOLIRIS, your doctor must enroll in the SOLIRIS REMS program; counsel you about the risk of meningococcal infection; give you information and a Patient Safety Card about the symptoms and your risk of meningococcal infection (as discussed above); and make sure that you are vaccinated with the meningococcal vaccine and, if needed, get revaccinated with the meningococcal vaccine. Ask your doctor if you are not sure if you need to be revaccinated.

SOLIRIS may also increase the risk of other types of serious infections. Certain people may be at risk of serious infections with gonorrhea. Certain fungal infections (Aspergillus) may occur if you take SOLIRIS and have a weak immune system or a low white blood cell count.

Who should not receive SOLIRIS?

Do not receive SOLIRIS if you have a meningococcal infection or have not been vaccinated against meningitis infection unless your doctor decides that urgent treatment with SOLIRIS is needed.

Before you receive SOLIRIS, tell your doctor about all of your medical conditions, including if you: have an infection or fever, are pregnant or plan to become pregnant, and are breastfeeding or plan to breastfeed. It is not known if SOLIRIS will harm your unborn baby or if it passes into your breast milk.

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements which could affect your treatment. It is important that you have all recommended vaccinations before you start SOLIRIS, receive 2 weeks of antibiotics if you immediately start SOLIRIS, and stay up-to-date with all recommended vaccinations during treatment with SOLIRIS.

What are the possible side effects of SOLIRIS?

SOLIRIS can cause serious side effects including serious infusion-related reactions. Tell your doctor or nurse right away if you get any of these symptoms during your SOLIRIS infusion: chest pain; trouble breathing or shortness of breath; swelling of your face, tongue, or throat; and feel faint or pass out. If you have an infusion-related reaction to SOLIRIS, your doctor may need to infuse SOLIRIS more slowly, or stop SOLIRIS.

The most common side effects in people with gMG treated with SOLIRIS include: muscle and joint (musculoskeletal) pain.

Tell your doctor about any side effect that bothers you or that does not go away. These are not all the possible side effects of SOLIRIS. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch, or call 1-800-FDA-1088.

INDICATION
What is SOLIRIS?

SOLIRIS is a prescription medicine used to treat adults with a disease called generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody positive. It is not known if SOLIRIS is safe and effective in children with gMG.

Please see the full Prescribing Information and Medication Guide for SOLIRIS, including Boxed WARNING regarding serious and life-threatening meningococcal infections.