This is Cathy and David’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

Cathy and David’s gMG story

DAVID:

Our family is our life. We have 4 children and 11 grandchildren whom we adore. Cathy is an amazing woman, working a full-time job, caring and advocating for me, and still being a loving wife, mother, and grandmother. I don’t know what I’d do without her. During my struggle with generalized Myasthenia Gravis (gMG), my inability to fully participate in family activities with my children and grandchildren has been extremely difficult and frustrating.

CATHY:

When David was diagnosed with gMG in 2010, our lives were turned upside down. I had a full-time job, but my second full-time job became caring for David and managing the household—all while trying to be the best mother and grandmother I could possibly be. I wanted to be there for everyone. I was David’s caregiver. I married him and believed in our vows—in sickness and in health—and David was sick. The unpredictability of each day was hard. On the days that David could get out of bed, I would get up at 5 AM to help him shower, shave, get dressed, and eat. But on many days, he was too exhausted and couldn’t even get up.

Then, I’d go to work and often get home after 8 or 9 PM. It was hard for both of us, but it is just what we did. This was our routine for over 5 years. The hardest part was watching how his disease affected David’s family life. I remember when our grandson was born, David was too weak to hold him. He also had a port in his chest that we were worried the baby might grab. He was too tired to fully participate in any family gatherings, and if he did, it would set him back for days.

DAVID:

I first noticed symptoms in 2010 when Cathy and I were on vacation. She noticed that my eye was drooping and asked if I was having problems with my vision. I also had facial numbness, eye swelling, and debilitating fatigue. I was a long-haul truck driver who often worked up to 70-hour weeks. I couldn’t afford to have these issues, but I was. Cathy had to drive us home from vacation and I’m a truck driver by trade—I don’t like to let anyone else in the driver’s seat.

CATHY:

I knew something was wrong when David handed me the keys. The next day, after we got home from vacation, David went back to work and I got a call. He had gone to make a routine delivery but wasn’t able to back his truck into the parking spot. He’s the kind of guy where it’s one try and he’s in. Something was wrong. We immediately went to his primary care physician (PCP) who diagnosed him with Bell’s palsy. But as his symptoms worsened over the next several months, David’s PCP eventually sent him to a neurologist. The neurologist had seen a case of gMG during his residency and thought David’s symptoms aligned with that but wasn’t sure. After more testing, the diagnosis was confirmed.

DAVID:

I had no idea what gMG was and it was overwhelming, but Cathy was there with me. She asked the questions we needed answers to and then I began my journey of multiple hospitalizations and treatments. During this time, if I wanted to spend time with my family, I had to plan for days beforehand. If there was a family birthday party for one of our grandchildren, I would rest for days, push myself through the party, and then suffer for several days after.

CATHY:

We host a wonderful Thanksgiving celebration every year with our entire family. I do all of the cooking and David would always be a huge help. But when he was sick, he didn’t have the energy and strength to even help set the Thanksgiving table. That was difficult.

DAVID:

In 2017, things went from bad to worse, and I ended up at the hospital. I was out of treatment options, and my sister, who’s in the medical field, first mentioned Soliris to me as a possible treatment for my gMG. I asked the first doctor who came in to see me about the drug. “I want to try it,” I said. “But you don’t know anything about it,” he responded. When you have a chronic illness, and you see something hopeful, you want to grab it. The timing was right because Soliris had just been approved by the FDA. Knowing my gMG was anti-AChR antibody positive and I was going to start Soliris, I connected with a Case Manager in Alexion’s OneSource™ program. She was able to help me figure out my health insurance coverage and to prepare me for what to expect. 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.

She went over the steps I would need to complete to get Soliris, including receiving meningococcal vaccinations at least 2 weeks before I started treatment. I received my first dose, and I did experience a slight headache.

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.

CATHY:

The next year, we hosted our annual Thanksgiving celebration, and David and our grandson teamed up to set up the chairs and tables. During the meal, David was able to play with our grandchildren and enjoy family. It was such a great feeling to see him participate and be with those we love.

DAVID:

My family is everything to me, and being able to take part in our celebrations is something I hadn’t been able to do since my diagnosis of gMG. I cannot thank my wife enough for all that she has done. For years, she has provided so much support and assistance. I hope everyone is as lucky as I am to have a caregiver like Cathy.

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IMPORTANT SAFETY INFORMATION & INDICATION FOR SOLIRIS® (eculizumab), INCLUDING BOXED WARNING
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about SOLIRIS?

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

  • SOLIRIS increases your chance of getting serious and life-threatening meningococcal infections. Meningococcal infections 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 have not already had this vaccine.
  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 before starting SOLIRIS. Your doctor will decide if you need additional meningococcal vaccination.
  5. Meningococcal vaccines reduce the risk of meningococcal infection 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
    • 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. Your risk of meningococcal infection may continue for several weeks after your last dose of SOLIRIS. It is important to show this card to any doctor or nurse who treats you. This will 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 about the symptoms of meningococcal infection
  • give you a Patient Safety Card about your risk of meningococcal infection, as discussed above
  • make sure that you are vaccinated with a meningococcal vaccine

SOLIRIS may also increase the risk of other types of serious infections. If your child is treated with SOLIRIS, make sure that your child receives vaccinations against Streptococcus pneumoniae and Haemophilus influenzae type b (Hib). Certain people may be at risk of serious infections with gonorrhea. Talk to your doctor about whether you are at risk for gonorrhea infection, about gonorrhea prevention, and regular testing. Certain fungal infections (Aspergillus) may also happen 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.
  • have not been vaccinated against meningitis infection unless your doctor decides that urgent treatment with SOLIRIS is needed. See “What is the most important information I should know about SOLIRIS?”

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. It is not known if SOLIRIS will harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if SOLIRIS 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. SOLIRIS and other medicines can affect each other causing side effects.

It is important that you:

  • have all recommended vaccinations before you start SOLIRIS
  • receive 2 weeks of antibiotics if you immediately start SOLIRIS
  • stay up-to-date with all recommended vaccinations during treatment with SOLIRIS

Know the medications you take and the vaccines you receive. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What are the possible side effects of SOLIRIS?

SOLIRIS can cause serious side effects including:

  • See “What is the most important information I should know about SOLIRIS?”
  • Serious allergic reactions. Serious allergic 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 allergic reaction to SOLIRIS, your doctor may need to infuse SOLIRIS more slowly, or stop SOLIRIS. See “How will I receive SOLIRIS?” in the Medication Guide.

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 called a monoclonal antibody. SOLIRIS is 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 & INDICATION FOR SOLIRIS® (eculizumab), INCLUDING BOXED WARNING
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about SOLIRIS?

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

  • SOLIRIS increases your chance of getting serious and life-threatening meningococcal infections. Meningococcal infections 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 have not already had this vaccine.
  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 before starting SOLIRIS. Your doctor will decide if you need additional meningococcal vaccination.
  5. Meningococcal vaccines reduce the risk of meningococcal infection 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
    • 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. Your risk of meningococcal infection may continue for several weeks after your last dose of SOLIRIS. It is important to show this card to any doctor or nurse who treats you. This will 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 about the symptoms of meningococcal infection
  • give you a Patient Safety Card about your risk of meningococcal infection, as discussed above
  • make sure that you are vaccinated with a meningococcal vaccine

SOLIRIS may also increase the risk of other types of serious infections. If your child is treated with SOLIRIS, make sure that your child receives vaccinations against Streptococcus pneumoniae and Haemophilus influenzae type b (Hib). Certain people may be at risk of serious infections with gonorrhea. Talk to your doctor about whether you are at risk for gonorrhea infection, about gonorrhea prevention, and regular testing. Certain fungal infections (Aspergillus) may also happen 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.
  • have not been vaccinated against meningitis infection unless your doctor decides that urgent treatment with SOLIRIS is needed. See “What is the most important information I should know about SOLIRIS?”

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. It is not known if SOLIRIS will harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if SOLIRIS 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. SOLIRIS and other medicines can affect each other causing side effects.

It is important that you:

  • have all recommended vaccinations before you start SOLIRIS
  • receive 2 weeks of antibiotics if you immediately start SOLIRIS
  • stay up-to-date with all recommended vaccinations during treatment with SOLIRIS

Know the medications you take and the vaccines you receive. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What are the possible side effects of SOLIRIS?

SOLIRIS can cause serious side effects including:

  • See “What is the most important information I should know about SOLIRIS?”
  • Serious allergic reactions. Serious allergic 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 allergic reaction to SOLIRIS, your doctor may need to infuse SOLIRIS more slowly, or stop SOLIRIS. See “How will I receive SOLIRIS?” in the Medication Guide.

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 called a monoclonal antibody. SOLIRIS is 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.