You know your body best. When something feels out of the ordinary, find out the reason why and steps you can take to take care of yourself. Listen to your body, take notes, and you may discover patterns and triggers to your OTC-D symptoms. The headaches, the fatigue—it’s important to understand and address the underlying cause so disease progression can be slowed. The types of food you eat play an important role in managing OTC-D, but some people need medication as well to help control ammonia levels.
RAVICTI can be effective in managing OTC-D in all ages when someone is not able to control their ammonia levels with diet and supplements alone. RAVICTI is nearly tasteless, nearly odorless, and can be taken as little as 3 times a day along with food or drink.
RAVICTI Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases dietary supplements. RAVICTI is not used for the acute treatment of hyperammonemia in people with UCD. It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.
Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea, or a rash while taking RAVICTI.
Your Patient Access Liaison (PAL) is a great resource as your point of contact for nonmedical questions related to the medicine and as personal support when needed throughout your treatment journey.
Learn how Molly incorporates her RAVICTI routine into her everyday life.
RAVICTI is incorporated in my daily life pretty simple. I try to prep my medications the night before. Now that doesn’t always happen, but it always happens in the morning before work. That’s just something I like to try to do just to be a little bit more prepared. But I take it at breakfast, lunch and dinner. So, I take it with all of my food. Like big meals.
When I go out just for the day, these every, every day I pack my meds in advance. So, wherever I am, wherever I go, whether I’m going out with family or friends, I just, I have it with me in my pouch. Like pre-packed, packaged, all done.
I think a lot of times when we go out, people don’t really have a chance to notice because I do it so quick, as I’ve done it for so long that it, a lot of people don’t even realize I’ve taken my RAVICTI. All the time. Even my mom and my grandma will be like, did, did you take it? And I’m like, I have already done that. (laughs) So, yeah.
It doesn’t matter if you are with new friends. It doesn’t matter if you’re on a date. Like, having to get over the fear of what other people think is going to be your best friend, and not worrying because once you start limiting yourself, you’re not gonna be able to take care of yourself. And I think that’s so important.
When it comes to who you want to share your OTC-D diagnosis with, it’s up to you and your comfort level. It’s your choice to disclose who knows and who doesn’t know about your OTC-D. If keeping the information confidential at school or in the workplace, however, make sure to still follow your dosing routine, as missing a dose could have negative health effects.
Hear about Juli's experience with elevated ammonia levels and how she learned to navigate them.
For myself, not being diagnosed until I was an adult, I’m sure there were many cases of elevated ammonia and I don’t know what sort of damage that did or what that’s going look like for me in the future.
When I first had the conversation with my care team about managing my symptoms, they did start me with just a low-protein diet. And they gave me symptoms to watch for. We quickly realized that that wasn’t working. So I did start out on a medication and was soon after prescribed RAVICTI.
When I got the news from my team that I would need medication as well as a low-protein diet in order to manage my symptoms, it was a little scary. It felt like maybe this OTC was taking over. But I quickly realized once I started that medication, that that was the best thing that could have happened. It’s really helped me stay on track, and just feel the best I can feel. And I’ve been on RAVICTI ever since.
Even though you’re feeling well, don’t stop taking your medicine. It’s very important to keep up with all your doses in order to feel your best. Another thing is just because you have this diagnosis, it doesn’t mean the end of the things that you enjoy. For me, it was almost like a new beginning. I had this diagnosis. I had a place to start. And I was able to get to a place where I feel so good and know what it’s like to feel good. Growing up I was sick all the time. And I thought that was how it was supposed to be.
It’s so important as a woman with OTC to take time for yourself. Especially as a mom, we put ourselves on the back burner. We’re doing everything for our kids. Everything for our family. And maybe everything for our career. But you really need to stop and take a moment for yourself. It took me a while to learn this, but once I did, and took that time for myself, whether it be going to the gym or just going for a walk or just really having a moment, by myself, it made me that much more present for the times I was there. I wasn’t always so tired. I could really be involved with what was going on. So, it really is important just to take a moment for yourself, whatever you need, to care for yourself. Because if you don’t care for yourself, you can’t care for others.
If and when you share information about your OTC-D carrier status, consider a private location or somewhere you feel comfortable and share information from this website and resources from your doctor to help explain OTC-D.
It’s that time of month again, and hormones are all over the place. Did you know that OTC-D can actually make your monthly period a dangerous time if ammonia levels are not managed due to additional stress on the body? Other symptoms that can be aggravated due to metabolic stress during this time can include gastrointestinal symptoms, such as vomiting and abdominal pain, headaches, and lack of energy. Additionally, increased stress on your body during your menstrual cycle can cause elevated ammonia levels.
If you are considering pregnancy, you probably have questions.
Lean into your support system when you need them!
Find out how Jocelyn’s support system of family, friends, and her Patient Access Liaison (PAL) has helped guide her throughout her health journey.
Living with a UCD is overall a roller coaster ride. I do have my ups and I have my downs. I have my good days and I have my bad days. But I think ever since I was diagnosed at the age of 8, I’ve had really great support systems on my side.
A few people that have helped me throughout my UCD journey I think first and foremost I would have to thank the Horizon By Your Side team. They have been really by my side and I think one of my biggest persons also is my PAL. I think just having somebody that understands the UCD, urea cycle, and just having someone that truly just knows what you go through is so much easier. And also, just having someone available at all times if you just have a question.
I’ve also been very blessed to have my friends, my family, my mom, who is probably my right-hand, my everything. Not because she’s a carrier of OTC, but because she has been by my side, through thick and thin. Whether it’s been the hospital visits. Whether it’s been just really understanding what OTC is. Having to do a family tree. Breaking down of where it started, how does it get passed down. If it gets passed down, just truly knowing more, but having my mom as my right-hand support system, I think has made everything and throughout this OTC journey so much easier.
I have an amazing group of girlfriends that have been able to support me throughout my entire journey. I’ve had pretty much the same group of girlfriends ever since high school…It took me also just a little bit to truly just sit down with them and have them really understand what I have…
And the fact that my friends really made me so much comfortable, it made everything so much easier… Just having their support has really just made a big impact in my life. But they’re always very attentive as to, well, what can Jocelyn eat? Or what can’t she eat? Can she eat something from the menu? Will she be okay? Does she have her medication on handy?
So, I think it’s family and friends, or I think those friends turned into family, because they cared so much about me. And it just made my life so much easier.
I have a three-year-old French bulldog. Her name is Ceonna. And she has genuinely helped me out. During those outings with Ceonna, it makes me look back and just really thank RAVICTI and Horizon By Your Side, to just have, be, for me to be able to enjoy those moments of beauty with my dog. So, if I go on a small hike or if I go on a small walk by the beach, if I go to a different park, I think I enjoy those beauty things with my dog, and it’s a reminder that, you know, staying on track with my medicine, staying on track with me eating, dietary, and being on track with everything, I’m able to enjoy the beauties of life, including my dog Ceonna.
I think my biggest motivator to stay on track with living with a UCD is the beauty of life. I love that I can just keep going. I think the number of times that I’ve been hospitalized has not stopped me, nor will it stop me. I’m very lucky to be able to have amazing people in my life and be just pushing forward in the things that I love.
I still have my mishaps when I slightly forget, but I try to stay on top of my medication, figure out what suits my diet well, and balance with work, family, medicine, and life. Overall, I think it’s been a journey. And I think I’ve been good at it so far.”
Women with OTC-D can find support managing their condition with a healthcare team that might include a dietitian and/or a metabolic geneticist.
Having an informed OTC-D conversation with the right doctor is crucial to getting the care you need. Prepare your Doctor Discussion Guide for your next visit.
RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:
Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.
Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.
Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:
RAVICTI may cause serious side effects, including:
See "What is the most important information I should know about RAVICTI?"
The most common side effects of RAVICTI in adults include:
The most common side effects of RAVICTI in children 2 years to 17 years of age include:
The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:
The most common side effects of RAVICTI in children less than 2 months of age include:
These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
For additional Important Safety Information, click here for the Medication Guide and discuss with your doctor.
RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects.