This is Robin’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

Robin’s gMG story

My town has a “no hurries, no worries” feel to it, and I was able to enjoy that carefree way of living for many years not yet knowing that difficult news and the hardship of living with a chronic illness were coming my way.

Experiencing symptoms

In 2005, during my second pregnancy, I experienced my first symptoms of generalized Myasthenia Gravis (gMG). I had extreme fatigue and terrible migraines. The fatigue was easy to blame on the pregnancy initially, and then on caring for a newborn, but then it began to take a horrific toll on my well-being, and I knew something wasn’t right.

I saw lots of doctors, tried over 7 different medicines, and was even treated for high blood pressure and TMJ—but my symptoms didn’t go away. Then, when I started getting double vision and had trouble reading the computer screen, I was referred to a neurologist. We reviewed my history and I explained to him that there were even times when my hands would tire from the simple task of digging in my purse for keys.

Being diagnosed

That day, in 2006, my neurologist decided to test me for generalized Myasthenia Gravis, and the results came back positive. I remember getting that phone call, and while I felt relieved to have a diagnosis and my symptoms validated, I was also scared. I immediately thought about my family: How would I be able to take care of my children? Would I be able to take care of myself? What would the future hold?

I often say that my daughter and my son were raised by 2 different moms—one before gMG and one after. For the first 10 years of my daughter’s life, I was physically active each and every day. I could play outside with her for hours, go on bike rides, and push her on the swing set.

But everything changed when I was diagnosed, shortly after my son was born. I couldn’t clean the house, fold the laundry, or even stir a pot. I couldn’t play with him, or even go to his soccer games. I call that version of myself a “sit down Mom.” No amount of rest was ever enough.

I have an incurable disease and as my symptoms—the increased fatigue and the inability to use my arm muscles—worsened, I was constantly filled with worry about the future. Living with gMG is a challenge, and in my small town, where nobody else has gMG and nobody has even heard of it, I felt very lonely and extremely isolated.

Finding hope

Starting in 2013, I had multiple hospitalizations due to my gMG. At this time, I decided to reach out to others in the gMG community through social media. While I have never met these individuals in person, they have been a tremendous source of support and inspiration, and I even consider a few among my closest friends.

In 2014, I had a follow-up appointment with a neurologist. He informed me about a clinical trial for a medication for anti-AChR Ab+ gMG patients. I knew right away that if I was able to participate, I would give it a try. I was selected and moved forward with my meningococcal vaccinations 2 weeks prior to starting Soliris treatment. 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.

I drove 2 hours each way to get the infusions every week for 4 weeks. After my fifth infusion, I went every other week. It was a long trip, but worth the effort. I was willing to do anything to have the chance to see some improvement in my gMG symptoms and my ability to take care of myself and my children again.

The most common side effects in people with gMG treated with Soliris include muscle and joint (musculoskeletal) pain. Please see additional Important Safety Information for Soliris, including Boxed WARNING regarding serious and life-threatening meningococcal infections, below.

A few months after beginning the trial, I saw a change in my gMG symptoms. I could begin to take care of myself and my family again. I was able to gain back some of my independence. In addition to being able to do household chores and errands, I can volunteer at my gym’s childcare facility, and even go to the gym from time to time.

Seeing improvement with Soliris

In October of 2017, the treatment I had been on as part of the clinical trial for 4 years was approved by the FDA and was called Soliris. My family celebrated like it was Christmas. Now, I have my Soliris IV infusion every other week administered at home by my infusion nurse. It takes 35 minutes. Serious infusion-related reactions can happen during Soliris infusions. I know to tell my doctor or nurse right away if I get any of these symptoms during a Soliris infusion: chest pain; trouble breathing or shortness of breath; swelling of the face, tongue, or throat; or feeling faint or passing out. My doctor told me that if I have an infusion-related reaction to Soliris, we may need to infuse Soliris more slowly, or stop Soliris. In addition to my home infusion nurse, I also work with my OneSource™ Case Manager, who has helped me with my insurance and is always available to answer any of my gMG questions.

Living with anti-AChR Ab+ gMG and Soliris

Today, I am able to take care of myself. You can’t appreciate being able to wash and dry your own hair, polish your own toenails, or even shave your own legs until it is something that you can’t do alone. I am able to take care of my children and participate in their lives by helping with their homework, cooking family dinners, and going to their sporting events. I am so excited to be able to go to the Friday night football games and cheer for my team. I am now the same mom for both my children—involved and engaged. It may not be the same life I had before my gMG diagnosis, but I am living life.

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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.