Kitzia Fights Back
ENSPRYNG is a prescription medicine used to treat neuromyelitis optica spectrum disorder (NMOSD) in adults who are aquaporin-4 (AQP4) antibody positive. It is not known if ENSPRYNG is safe and effective in children.
My name is Kitzia. I am married to Jose, and we've been married a few years.
One of the cool things we like to do is prep and make tamales. We have a family business.
And I've been living with NMO since 2005.
I was 14 years old. I was getting tingling sensations in my feet and in my hands. I was not urinating or using the washroom at all. I was also very sensitive in my stomach and my back area, and it felt like burning sensations internally, like bee stings.
At the time, I didn't know if it was serious or not, and then one day I tried to stand up, and I just collapsed on the floor.
My parents rushed me to the ER, and immediately from there they started hooking me up all over the place, and I had no idea what was going on. I just knew that I was in so much pain.
In the hospital, they thought it was multiple sclerosis in the beginning.
They did a lot more tests, and then they came back with a diagnosis of neuromyelitis optica, or NMO.
I was scared when they came back with that diagnosis, because I didn't believe that I had a disease. I was shocked, I was frightened, and I started crying. It took a lot of years for it to sink in.
My mom was very involved. She created an NMO Bible that was very organized, and she kept track of everything from medications to doctor’s offices to relapses that I had at the time. That was her way of keeping track of everything for me and what to do in situations.
We went through three different neurologists before we found the right one that was right for me that was able to help me.
He had really great bedside manners, and he was very knowledgeable with my condition.
As a teenager living with NMO, it was kind of difficult, especially when I would relapse. I was having about three to four relapses a year.
Most of my relapses involved my lower extremities. I would not be able to walk, so it was really hard for me to go back to the way it was beforehand.
I've had a couple relapses where I had facial paralysis (dysphasia) and I wasn't able to speak, and then another relapse that I had was vision loss, and they were very hard and scary to get through.
There were not many treatments out there, and as I became an adult, there were no treatments specific for NMO patients.
But one day, my neurologist told me about a clinical trial for a drug called satralizumab, which was being studied for NMO. Of course, satralizumab is now known as ENSPRYNG.
I was so excited to hear about the trial. My doctor felt I'd be a good candidate for it, and I wanted to give it a shot.
Before I jumped in, we discussed all the risks and potential benefits of the treatment.
My mom and I especially wanted to learn all about the possible side effects.
Who should not receive ENSPRYNG
Do not take ENSPRYNG if you:
- are allergic to ENSPRYNG or any of the ingredients in ENSPRYNG.
- have an active hepatitis B infection.
- have active or untreated inactive (latent) tuberculosis.
ENSPRYNG may cause serious side effects including:
- increased liver enzymes
- low neutrophil count
- serious allergic reactions
The most common side effects of ENSPRYNG include:
- sore throat, runny nose (nasopharyngitis)
- extremity pain
- upper respiratory tract infection
- inflammation of the stomach lining (gastritis)
- joint pain (arthralgia)
I entered the trial in 2015. So far, my doctor and I are pleased with my results on ENSPRYNG.
I know everyone's experience is different, but I feel it's helping me manage my NMO.
Some NMO symptoms that I still experience are the numbing on my stomach, and my back and stiffness.
I still have bladder issues. I'm not able to empty, so I do have to catheterize. Overall, my treatment plan has been great.
I take ENSPRYNG regularly as prescribed by my neurologist.
I also exercise within my limits. I do cardio, and I also eat right, and I try to get enough sleep.
My husband and my family are very supportive. They help me stay positive. My doctor's very supportive as well, so I do reach out to him for any little concerns or questions that I have.
I don't want NMO to define me. When I have a flare-up, I don't let it take me down or slow me down. But there are times where I do need to take a break, and I just sit down and just stop moving for a while, because I'm constantly moving on the go.
I just want to keep going and live my life, and I want to grow in a family with my husband and just keep moving.
Talk to your doctor to see if ENSPRYNG may be right for you.