Real patient stories

When I was a senior in high school, unusual lesions began to appear on my hands and face. I was a typical teenager and didn’t think anything bad could happen to me. After seeing a rheumatologist, I was diagnosed with systemic lupus erythematosus or lupus. I may have been young, but I knew that with this condition my daily life would forever be changed.

My rheumatologist suggested I try an injection called Acthar® Gel (repository corticotropin injection). He explained that it is administered under the skin or into the muscle to help improve the symptoms associated with my condition. We also discussed the potential risks and benefits of this treatment, including the most common side effects such as injection site reactions, physical weakness, and fluid retention, just to name a few. After the treatment was approved by my insurance, my doctor and I worked together to find the dose that would be the most effective in managing my symptoms.

When I first started on Acthar, a Nurse Navigator* came out to my home to train me on self-injections, and it was so helpful. After training with them, I received a booklet with self-injection instructions to refer to until I didn’t need assistance anymore. My journey has been filled with ups and downs. I hope that by sharing my story, I can encourage others to never give up and find the treatment options that work best for them.

Everyone’s experiences are different. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.

A serious medical diagnosis can seem devastating; what matters most to me is how I choose to keep myself going. When my nephrologist diagnosed me with proteinuria due to nephrotic syndrome, I was scared. My doctor soon recommended treatment with Acthar® Gel (repository corticotropin injection), saying that he felt that it might be a good option for me. We discussed the potential risks and benefits of Acthar Gel, including the most common side effects such as injection site reactions, physical weakness, and fluid retention, just to name a few.

I liked that he said I might not have to change my daily routine while treating with Acthar Gel. After 6 months of treatment with Acthar, I was told I no longer needed to treat my condition because my proteinuria levels were being managed. Of course, this is just my experience and experiences vary. My nephrologist told me the treatment would be delivered to my local pharmacy. My treatment journey began with a home visit from a Nurse Navigator* who showed me how to self-inject the medication. Now, I see my nephrologist every 6 months to monitor how things are going.

Everyone’s experiences are different. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.

I never saw keratitis coming, but thankfully, my doctor saw Acthar® Gel (repository corticotropin injection) in my future.

When my vision first changed, I was working as a social service manager for a nonprofit. I couldn’t read anything up close and my eyes suddenly became dry. After several appointments with optometrists and referrals to multiple specialists, I was diagnosed with keratitis.

My doctor and I discussed using Acthar to treat my condition. He also told me I’d be assigned a Case Manager through Acthar Patient Support. They helped me get started and guided me to online injection videos to help boost my confidence. The first few times I injected myself, I experienced redness at the injection site. I discussed this side effect with my doctor and Acthar Patient Support, and I was able to continue with my injections. My doctor and I are very pleased with my progress, and now, the future looks brighter.

Everyone’s experiences are different. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

When I was diagnosed with uveitis, I felt lost. I had never heard of uveitis! I was scared, too—I wasn’t sure how this diagnosis would affect me long-term. I didn’t want to lose my eyes or my vision.

My symptoms, which started in 2002, included pain, swelling, and redness in my left eye. I was prescribed medications for the inflammation, which I took every day for about four weeks, and my condition improved. I didn’t experience any major flare-ups for the next 10 years. But then, I started experiencing symptoms in my right eye and scheduled an appointment with my ophthalmologist to check it out. As I had thought, I had uveitis in that eye, too. We started the same treatment plan.

This time, however, the treatment didn’t seem to be helping. The flare-ups continued in both eyes and on top of that, I developed cataracts. Several doctor recommendations later, I was seeing a new specialist—one who prescribed me Acthar® Gel (repository corticotropin injection) to treat my uveitis. I was assigned a Nurse Navigator,* and they taught me how to do my self-injections subcutaneously (under the skin). Now, I want others to know they’re not alone in their journeys. There are more adventures to be had!

Everyone’s experiences are different. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.

When I was diagnosed with polymyositis, I was in the middle of living out an adventure. I wasn’t ready to give up on my travels. It was important to me to define my why—my reason to fight. My family is my why, and Acthar® Gel (repository corticotropin injection) is my how—how I’m fighting my polymyositis.

It all started toward the end of 2016. I began noticing the strangest things in my body. I started having pain and discomfort in my shoulders which made simple tasks like opening a water bottle or putting on my coat difficult. I’d gone through countless tests, including biopsies and X-rays. After all this, my doctors diagnosed me with polymyositis.

A few doctor recommendations later, I found my ideal healthcare team. Together, they worked out a plan of action to start me on an injectable treatment called Acthar Gel for the treatment of polymyositis. At first, I experienced some difficulty sleeping as a side effect, but this was resolved by moving my twice-weekly injections to the morning. A Nurse Navigator* was assigned to me, and they taught me how to self-inject under the skin. Now, I’m determined to inspire other patients to define their why while also treating my polymyositis.

Everyone’s experiences are different. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.

My life has made me who I am: strong, resilient, and able to face any challenge thrown my way. These qualities give me the ability to weather even the most intense of my lupus symptoms.

My symptoms started when I was 19—I was experiencing odd pains and irritation in my eyes. I was also experiencing rashes across my face that wouldn’t go away. Finally, using an assessment of my symptoms and results from lab work, my doctor diagnosed me with lupus.

I was started on treatment but didn’t improve. My doctor referred me to another rheumatologist. We tried numerous treatment options. Finally, my doctor recommended Acthar® Gel (repository corticotropin injection). We discussed the potential risks and benefits of this treatment, including the most common side effects such as injection site reactions, physical weakness, and fluid retention, just to name a few. A Nurse Navigator was assigned to me, and they were there for support when I needed it.* My resilience has kept me strong throughout my journey, and now I want to share my story to give hope to others in similar situations.

Everyone’s experiences are different. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.

Life is full of second chances, though they aren’t guaranteed. After I was diagnosed with lupus, I thought all my second chances were gone. But my family instilled in me the values of hope and determination. That’s what led me to find Acthar® Gel (repository corticotropin injection).

In 2011, I began to experience fatigue and joint pain to the point where getting out of my chair became difficult. I assumed it was a sign of getting older, but eventually, I couldn’t ignore the pain any longer and I made an appointment with my doctor. After several blood tests and a few visits to the rheumatologist, I was diagnosed with lupus.

I worked with my primary care doctor to find my current rheumatologist and neurologist. Together, my healthcare team recommended I start treatment with Acthar Gel to manage my lupus symptoms. I have a dedicated Nurse Navigator* who taught me how to self-inject under the skin. Now, I’m determined to help people find their own second chance at fighting their condition.

Everyone’s experiences are different. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.

Throughout my 20s, I was a very healthy person. I followed a strict diet and exercise routine to a T. When I was about 31 years old, I felt a gradual but dramatic weakness in my muscles. They were tender, stiff, and sore. My face, chest, and hands were often breaking out in weird rashes with no clear cause. When I explained all this to my family doctor, they pointed me in the right direction. After a visit to the orthopedic surgeon and an MRI, I was diagnosed with dermatomyositis.

I tried several treatments, but they weren’t for me. Then, my doctor recommended Acthar® Gel (repository corticotropin injection). We discussed the potential risks and benefits of Acthar Gel, including the most common side effects, such as injection site reactions, physical weakness, and fluid retention, just to name a few. After weighing the benefits and risks, I decided to start treatment. Through Acthar Patient Support, I had injection training available to me via a Nurse Navigator.* My Nurse Navigator even calls to check up on me. Now, I’m sharing my story to help bring awareness and bring shared experiences to light.

Everyone’s experiences are different. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.

When I was diagnosed with sarcoidosis, I had to give up my career working as a flight attendant. I had to adjust to a new life.

It all started in 2019, after a 10-hour flight from Brazil. I suddenly had trouble breathing. I grew increasingly sicker, and when I visited a pulmonologist, I was diagnosed with symptomatic sarcoidosis.

My pulmonologist had me try multiple treatments without much improvement until they asked if I’d be interested in trying Acthar® Gel (repository corticotropin injection). I was able to get financial assistance through Acthar Patient Support. I also have a dedicated Nurse Navigator* who I can call with any questions about injection training. I’m very grateful for this program; the support is amazing. It makes me feel like a human being—not a number or a dollar amount. Now, I’m learning to accept my sarcoidosis and help other patients, too.

Everyone’s experiences are different. For example, I did not experience any side effects with Acthar Gel, but I later learned that some people have experienced increased blood pressure from taking it. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.

I was the life of the party who never said no to a good time. I only had to worry about when to pick up my kids from school and what my wife wanted to eat for dinner. Sounds like every run-of-the-mill story ever, right? My life changed after what I thought were kidney stones turned out to be something more serious. I was diagnosed with symptomatic sarcoidosis, and I knew it was important for me to find a treatment that would work for me.

My doctor suggested Acthar® Gel (repository corticotropin injection) and explained that it was an injection administered under the skin or into the muscle to help with my symptoms such as breathing difficulty. I did experience some side effects while taking Acthar Gel in the beginning, like shortness of breath and fatigue with any kind of activity, but this is just my experience.

I was able to get financial assistance for Acthar Gel through the Patient Support Program, and they offered tips and good information when I first started treatment. I have a dedicated Nurse Navigator* who calls me every other month to check in, and she is always available if I have any questions about injection training. She spoke with my wife and explained to her how to administer my Acthar Gel injections so we can treat at home. Now, I’m sharing my story to encourage others to find treatment options that work for them.

Everyone’s experiences are different. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.