Finding a New Purpose in the Face of ALS
This is a sponsored post written by Craig Fuchs in collaboration with MTPA
This content is sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA) and is intended for US audiences only. Any other present or future content posted by the contributor, not expressly designated as “Mitsubishi Tanabe Pharma America, Inc. – sponsored content” is not associated with MTPA. Craig is an actual patient who took Radicava ORS® (edaravone) until May 2024.
The information provided here is general in nature and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. You are strongly encouraged to seek the advice of your doctor or other qualified healthcare provider with any questions regarding a medical condition.
Individual results may vary. Please see Important Safety Information below, full Prescribing Information, and Patient Information on Radicava.com.
Before My Diagnosis
I was an avid golfer, musician, and traveler who loved the outdoors. The mainstay in my life was music. Growing up, my dad was a high school band director. We lived in a small town and at night we would go back to school with my dad when he had rehearsals, so I tell people I grew up in a band room.
Just like my dad, my uncle, and my brother, I became a band director. I taught 10 years of high school band then 24 years at Pittsburgh State University. Before retiring, my career as a musician allowed me to visit 25 countries conducting various bands and orchestras. I was blessed to meet and connect with so many wonderful people who provided opportunities for me.
The Road Leading to My ALS Diagnosis
In August of 2021, I started noticing some difficulty straightening my right leg when I went to bed. I had to work it out to get it to a flat position. In the morning it would take about 20 minutes of walking around to get it to feel kind of normal.
Like most people, I went to a chiropractor, then through physical therapy, and even tried acupuncture to figure out what was going on. Originally, they thought it was a pinched nerve, so I had an MRI done. That came back fine, so in December I went in for an electromyogram (EMG), which raised some concerns. An EMG is a test doctors use to check how well muscles are working by measuring the electrical signals they produce when they move. After going back for a second EMG I was given a preliminary diagnosis of ALS. After a second opinion, it became my official diagnosis on February 23, 2022. Of course, I just fell apart emotionally. It was crushing, no question about it.
Adjusting to My New Normal
After my diagnosis I was doing some mentoring at the elementary school in my neighborhood two days a week. I wanted to stay engaged, but unfortunately, I had to stop as my symptoms progressed. Everything had changed. I couldn’t walk or stand anymore, so my life was literally spent in a 300 square foot area. Thankfully, I had my family and a group of about six or seven friends who were on rotation and came by throughout the week to sit with me and talk for a few hours.
Starting Treatment With RADICAVA ORS®
In June of 2023 I began RADICAVA ORS®. My doctor told me that it helps slow the progression of ALS for some patients. Looking back, I feel like my progression was pretty slow compared to others that I read about, so I was very blessed RADICAVA ORS® is out there and I think it had proven to be helpful.
In the clinical study, RADICAVA® slowed the loss of physical function as measured by the ALS Functional Rating Scale–Revised (ALSFRS-R) by 33% versus placebo. At 24 weeks (about 6 months), patients who did not receive RADICAVA® (66 patients) declined more rapidly in physical function, having lost an average of 2.49 points more than those who received RADICAVA® (68 patients). The most common side effects of RADICAVA® include bruising (contusion), problems walking (gait disturbance), and headache. Fatigue was also reported in 7.6% of patients taking RADICAVA ORS®. Talk to your doctor about all the benefits and risks associated with treatment. This is Craig’s experience and does not necessarily represent the experience of others.
RADICAVA IV and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
Do not receive RADICAVA (edaravone) IV or RADICAVA ORS (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA IV and RADICAVA ORS.
Please see Important Safety Information below and click here for full Prescribing Information and Patient Information.
Learn more about ALS and how RADICAVA ORS® may help you.
Finding My New Purpose and Community
Going from spending my time playing golf and traveling for music, to being in bed or a recliner all day, had forced me to find other ways to keep myself mentally engaged. It took a long time, but I worked hard at recreating myself and felt like I had a purpose that’s important again.
I became a different type of conductor. I have a Facebook group of over 300 people called “Band of Believers.” They’re my ensemble members. I try to be an inspiration for people. I post about encouragement, inspiration, and faith. It feels really good trying to help others.
I rely on this community of friends and think having a sounding board of people who are experiencing similar things to you is extremely important. I could text or even call one of them and they would be right there for me. Knowing that you have a group of people who care about you makes all the difference.
Learn more about participating in the Share Your Story program at ShareYourALSStory.com.
IMPORTANT SAFETY INFORMATION
Do not receive RADICAVA (edaravone) or RADICAVA ORS (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA and RADICAVA ORS.
Before you take RADICAVA or RADICAVA ORS, tell your healthcare provider about all of your medical conditions, including if you:
- have asthma.
- are allergic to other medicines.
- are pregnant or plan to become pregnant. It is not known if RADICAVA or RADICAVA ORS will harm your unborn baby.
- are breastfeeding or plan to breastfeed. It is not known if RADICAVA or RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive RADICAVA or
RADICAVA ORS or breastfeed.
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 RADICAVA and RADICAVA ORS?
RADICAVA and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.
- Hypersensitivity reactions have happened in people receiving RADICAVA or taking RADICAVA ORS and can happen after your medicine has been given.
- RADICAVA and RADICAVA ORS contain sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma.
- Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma).
Your healthcare provider will monitor you during treatment to watch for signs and symptoms of all the serious side effects and allergic reactions.
The most common side effects include bruising (contusion), problems walking (gait disturbance), and headache.
These are not all the possible side effects of RADICAVA or RADICAVA ORS. 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 www.fda.gov/medwatch or Mitsubishi Tanabe Pharma America, Inc. at 1-888-292-0058.
INDICATION
RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
For more information, including full Prescribing Information, please visit Radicava.com.
RADICAVA and RADICAVA ORS are registered trademarks of Mitsubishi Tanabe Pharma Corporation.
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