This is Janice’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

Janice’s gMG story

I remember the point when I knew that I was experiencing something more than a bronchial infection or general muscle weakness. It was New Year’s Eve 14 years ago, and I was walking to my neighbor’s house carrying a raccoon trap. Most people bring champagne or party favors, but my neighbor needed help trapping and relocating raccoons that frequented our neighborhood.

Realizing something’s “off”

At that point, I was an avid runner and in very good shape, so the short walk should have been inconsequential—but it wasn’t. I fell over and couldn’t stand up straight. My legs collapsed beneath me. Soon after, I went to see my primary care physician.

I told him about my fall and the recent issues I was having with my speech. I vividly recalled when my dear friend asked me to speak at her late husband’s funeral. It was an honor and a privilege, but after 3 minutes into my eulogy I began to slur my words and no one could understand me. I remember the humiliation and sadness I felt, and it wasn’t something I could explain to the church full of guests.

After I shared these incidents with my doctor, he immediately sent me to the hospital and ordered an MRI and bloodwork. What I learned later was that he was testing me both for multiple sclerosis and generalized Myasthenia Gravis (gMG).

Advocating for yourself

I was diagnosed with gMG and sent to a neurologist. I tried several different treatment options without seeing much improvement, so I researched as much as I could and became my own best advocate. I also turned to the MGFA and became an active participant in my local gMG support group. Through that network, I found the neurologist that I still see to this day.

Through that experience, I realized that only you know what your body is feeling. Only you know when something isn’t right. But you need a strong medical partner as well. For me, I look to my neurologist to be the quarterback of my treatment team—he talks to my other doctors and together we come up with the best plan.

Taking steps forward

Despite being on treatment, I still struggled. I couldn’t lift my arms, I walked with a limp, and I couldn’t speak clearly. I was always tired and my muscles were weak, which limited my mobility, forcing me to use a cane, walker, or scooter for close to a decade.

In January 2018, I learned about Soliris through my advocacy group, and I asked my neurologist about it. He said my gMG was antibody AChR positive and that Soliris was an option and I would first need the meningococcal vaccinations at least 2 weeks before my first dose of Soliris. 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.

One side effect I have experienced with Soliris is a dry throat; however, my experience may be different from others’, and each patient should talk to their physician. For Soliris, the most common side effects reported for gMG in the trials were muscle and joint pain, which is also referred to as musculoskeletal pain.

Please see additional Important Safety Information for Soliris, including Boxed WARNING regarding serious and life-threatening meningococcal infections, below.

Now that I am on Soliris, I see the greatest results with the giraffes and the bears. I know that might sound odd, but a few years ago to relieve stress, I began volunteering at my local zoo. I enjoy greeting and interacting with the kids on field trips and visiting families. And now, I have the strength to walk from my car to the giraffes and bears, at the far end of the zoo. I am living with my gMG and managing it every day.

MAKE A DIFFERENCE

Are you interested in becoming an MG Star?

Contact us to share your story so you can help inspire others who are living with anti-AChR Ab+ gMG.

Stay Connected

Sign up to get the latest news and information about anti-AChR Ab+ gMG and Soliris to help you make the most of your treatment.

Sign up now
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.