Seeing blood in your urine can be startling. Especially in the middle of the night when you’re only half awake.
Having dark or blood-stained urine (pee) can be a sign of an infection. But it can also be the first (and most common) sign of a rare blood condition called paroxysmal nocturnal hemoglobinuria (PNH). If you also have constant fatigue, shortness of breath, back pain or just don’t feel right, it may be time to get things checked out.
Cleveland Clinic has expert healthcare providers who diagnose and treat only rare blood conditions and bone marrow failures, like PNH. We know what to look for to make a correct diagnosis and how to focus treatments on your unique needs. We’re here to help you get relief from your symptoms and keep PNH from progressing to other complications.
Cleveland Clinic is a well-known and respected industry leader in treatments for rare bone marrow failures, cytopenias, blood cancers and blood conditions. Healthcare providers throughout the U.S. and around the world refer patients to us for specialized care they may not be able to get closer to home.
Our team approach gives you access to all the experts you need. We handpick your providers from different specialties. They work to diagnose and treat PNH and related conditions, like aplastic anemia and myelodysplastic syndrome. Meet our team.
We participate in PNH clinical trials. This helps us find new ways to treat this disorder and its complications, such as anemia, kidney disease and blood clots. Clinical trials offer innovative therapies to people who thought they were out of options.
You may not always feel like going to an in-person appointment. Our virtual visits let you meet with your provider, go over test results and adjust your treatment plan without having to leave home.
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Paroxysmal nocturnal hemoglobinuria can happen when a genetic change (mutation) affects how your blood cells work. PNH is a big name for a condition with one standout symptom — red/brown/dark urine that you notice late at night or early in the morning. “Paroxysmal” means “sudden.” “Nocturnal” means “night.” And “hemoglobinuria” refers to pee stained with blood.
You can have dark red urine when your immune system breaks down red blood cells too quickly. Your body can’t keep up and pushes the protein that makes your blood look red (hemoglobin) into your bloodstream — and, eventually, your pee. This overflow can trigger chronic kidney disease.
In the meantime, your bone marrow (the spongy center of your bones that makes blood cells) works as hard as it can to replace the missing red blood cells. Often, it can’t, and that can cause hemolytic anemia. You’re also at risk for blood clots (thrombosis) if you have PNH.
It’s important to get a correct diagnosis and start treatment as quickly as possible. And from providers who have experience with this rare condition. Our specialists have that expertise and treat the many symptoms, side effects and potential complications of PNH.
We know it can be stressful to learn you may have a rare bone marrow failure. And facing appointments with different providers, testing and more might seem overwhelming. That’s why we do our best to streamline the diagnostic process. We try to have you see multiple providers and get tests in as few visits as possible. We do what it takes to move you through each step quickly so you can get started with the best treatment for your needs.
When you come to your first appointment, we’ll take some time to get to know you and understand what’s been going on. We’ll want you to tell us about your symptoms, how long you’ve been feeling this way and how it’s affecting your life. We’ll also ask questions about your medical history and your family’s medical history. All of this helps us make a correct diagnosis.
Paroxysmal nocturnal hemoglobinuria symptoms can be similar to those of many other conditions. And some, like aplastic anemia and myelodysplastic syndrome, can be risk factors for developing PNH. So, we make sure to rule out other conditions and pinpoint paroxysmal nocturnal hemoglobinuria with different tests, like:
Learning that you may have a rare blood condition can leave you worried about your future. But having a trusted team of healthcare providers on your side can help you feel more confident that you’ll get the best possible treatment. That’s why we encourage second opinions.
We work to provide priority appointments for anyone looking for a second opinion. Our team of experts will help you understand your diagnosis and how we build a personalized treatment plan. And we’ll walk you through what you can expect every step of the way. Getting a second opinion can ease your mind and help you feel more comfortable with starting treatment.
Cleveland Clinic believes that more minds working together make better treatment plans. And that means individualized care. That’s why you’ll get a customized team of providers from different specialties. They may include:
We offer treatment for paroxysmal nocturnal hemoglobinuria at the following location in Northeast Ohio.
When your care team builds your treatment plan, they consider many things. This includes your overall health, test results, symptoms (or lack of them) and your recovery goals. All these play a role in making sure you get care that delivers the best possible results.
The first treatment we try for PNH aims to prevent damage to your healthy blood cells. We use medications called complement inhibitors. They keep proteins in your complement system (part of your immune system) from attacking and destroying abnormal red blood cells.
Two common complement inhibitors given as injections (shots) are called eculizumab (SOLARIS®) and ravulizumab (ULTOMIRIS®). Another new shot is called pegcetacoplan (EMPAVELI®). It may be better than other treatment options at reducing the need for transfusions to manage anemia.
Depending on your symptoms and test results, your care team may recommend other treatments to support complement inhibitor therapy, like:
Paroxysmal nocturnal hemoglobinuria is chronic. This means you’ll have to manage it for the rest of your life. But today’s PHN treatments can help protect your red blood cells and lower your risk of serious illness. You’ll need to have regular visits with your care team and testing to keep an eye on your symptoms and blood cell counts.
Finding out you have paroxysmal nocturnal hemoglobinuria can leave you wondering what to do next. But you don’t have to manage this rare blood condition on your own. Cleveland Clinic’s experienced and caring healthcare providers will help you understand your treatment options. We’ll guide you through diagnosis, treatment and follow-up. We’re here for you as long and as often as you need us.
Getting an appointment with Cleveland Clinic’s paroxysmal nocturnal hemoglobinuria experts is easy. We’ll help you get care.
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