Chronic Immune Thrombocytopenia (ITP): Symptoms, Causes, Treatment

Medically Reviewed by Brunilda Nazario, MD on August 07, 2024
Written by Stephanie Watson
10 min read

Immune thrombocytopenia (ITP) is a rare blood disorder. Your immune system mistakenly destroys platelets, cells that help your blood clot after an injury. The lack of platelets makes you bruise or bleed more easily. Idiopathic thrombocytopenic purpura is an older name for this condition.

Sometimes ITP goes away on its own without treatment. In other cases, the condition is chronic and needs long-term treatment to manage.

ITP vs. TTP

Thrombotic thrombocytopenic purpura (TTP) is another rare blood disorder. People with TTP don't have enough of an enzyme called ADAMTS13 that's involved in blood clotting. Without this enzyme, blood cells stick together too much and form lots of clots in small blood vessels. The blood clots block the flow of blood to organs like the brain, heart, and kidneys. Excess clotting also uses up the platelets you need to stop the bleeding when you're hurt.

TTP is very serious. A lack of blood flow can damage organs and cause a stroke or brain damage.

Chronic ITP vs. acute ITP

ITP comes in three types based on how long symptoms last. 

Acute ITP usually lasts for less than 3 months. Doctors sometimes call it newly diagnosed ITP. It's the most common type. Acute ITP mostly affects children ages 2 to 5 after they've had a viral infection. About 1 in 4 children with acute ITP go on to develop chronic ITP.

Persistent ITP lasts for 3 to 12 months.

Chronic ITP lasts for more than 12 months. It mainly affects adults, but sometimes children and teens get this type. 

A drop in platelets can make you bruise or bleed more easily. Common bleeding symptoms from ITP include:

  • Bruises that appear on your skin for no reason
  • Tiny reddish-purple spots called petechiae on your lower legs, from leaking blood vessels under the skin
  • Large red, purple, or brown spots called purpura

What's the first sign of ITP?

Many people have no symptoms in the early stages when ITP is mild. Once your platelet count drops very low, you may bruise or bleed more easily than usual.

Other ITP symptoms

A low platelet count also causes symptoms like these:

  • Bleeding gums
  • Nosebleeds that are hard to stop
  • Blood in your urine or poop
  • Heavy periods that last longer than 7 days
  • Extreme tiredness

How long do symptoms last?

Acute ITP symptoms often disappear after a few weeks. Chronic ITP symptoms last for a year or longer. The symptoms can continue for many years, or even for a lifetime.

A problem with your immune system causes ITP. The immune system makes proteins called antibodies that normally target viruses and bacteria. In this case, antibodies mistakenly tag platelets as foreign invaders. Then the immune system sends out white blood cells to attack the tagged platelets.

In adults, ITP can start after a viral infection like HIV or hepatitis C, or after a bacterial infection such as H. pylori. In children, it often starts after a viral infection like the flu.

Doctors divide ITP into two types based on the cause:

  • Primary ITP, which doesn't have an obvious cause
  • Secondary ITP, which is caused by a medication, an infection, or an autoimmune disease like lupus

Chronic ITP is up to three times more common in women than men. You may be at higher risk if you:

  • Have an infection like HIV, hepatitis C, cytomegalovirus, or varicella zoster (the virus that causes herpes and shingles)
  • Have an autoimmune disease like rheumatoid arthritis or lupus
  • Take certain blood thinners, antibiotics, or seizure medicines
  • Have a cancer like chronic lymphocytic leukemia (CLL), lymphoma, or adenocarcinoma
  • Have an underactive thyroid gland or Addison's disease

Rarely, children develop ITP after they get a vaccine such as measles-mumps-rubella (MMR).

How common is it?

ITP is very rare. About 9 out of every 100,000 people in the United States have ITP. Around 3 out of every 100,000 people get a diagnosis each year. Children more often have the acute form, while chronic ITP affects more adults.

To diagnose ITP, the doctor will ask about your medical history and family history. They'll look at your skin for the bruises and bleeding that ITP causes. You may need other tests to rule out other possible causes of bruising and bleeding.

Testing for ITP

No single test can confirm an ITP diagnosis, but tests like these can rule out other conditions with similar symptoms:

Blood tests. A complete blood count (CBC) measures the number of platelets and other cells in a sample of your blood. Another blood test checks for the antibodies that attack platelets in ITP. Your doctor might also test you for infections like HIV or hepatitis C that can cause ITP.

Peripheral blood smear. This test examines your platelets under a microscope to look for changes.

Questions to ask your doctor

ITP is a rare disease. You might not know anything about it when you get the diagnosis. Learning as much as you can about ITP will make you a more informed partner in your care.

Here are a few questions to ask your doctor:

  • What do you think caused my ITP?
  • Do I need to start on a treatment right away? Why or why not?
  • Which treatment do you suggest for me? How might it help me?
  • How long will I need to stay on the treatment?
  • How will you monitor me?
  • What are the next steps if a treatment I try doesn't work?
  • What side effects could the medicine cause? How can I relieve those side effects?
  • What lifestyle changes can help me manage ITP?

Hematologists are the specialists who treat blood disorders like ITP. You may see a hematologist for regular follow-up visits to monitor your disease. Your treatment team might also include nurses, plus a surgeon if you need to have spleen removal surgery.

After an ITP diagnosis, your treatment team will meet with you and explain next steps. The hematologist will go over all the possible treatment options and whether you need to start on medicine right away.

If you don't need treatment, your doctor will schedule regular checkups to test your platelet count and make sure it doesn't get too low. The doctor will also tell you about lifestyle changes to help you live better with ITP.

 

Mild ITP may not need treatment. Your doctor might just check your platelet count and watch your symptoms on a regular schedule. Your treatment will depend on the risks and seriousness of a potential bleed.

If you do need treatment, the one your doctor recommends will depend on your:

  • Symptoms
  • Platelet count
  • Age
  • Other medical conditions
  • Preferences

Managing ITP symptoms

Corticosteroids are the first treatment for most people with ITP. These medicines stop your immune system from destroying platelets. They also reduce bleeding. 

Once your platelet count improves, your doctor will lower the steroid dose a little at a time. Long-term corticosteroid use can increase your risk for infections, high blood sugar, weak bones, and other side effects.

If you have serious bleeding from ITP, you may need a platelet transfusion. You'll go to a hospital, where they'll inject healthy platelets from a donor into your bloodstream.

If you're bleeding a lot or corticosteroids don't increase your platelet count enough, you may get intravenous immunoglobulin (IVIG). This medicine goes through a small tube into your vein. IVIG contains antibodies called immunoglobulins that stop your immune system from attacking your platelets. Because the effects wear off, you'll have to get IVIG once every 2 to 4 weeks.

When treatment doesn't work

Corticosteroids and IVIG don't help everyone. Sometimes these treatments help for a while and then stop working. If treatment isn't working, the next step could be to take one of these medicines that increase your body's platelet production: 

  • Avatrombopag (Doptelet)
  • Eltrombopag (Promacta) 
  • Romiplostim (Nplate) 

Rituximab (Rituxan, Ruxience, Truxima) also increases platelets, but in a different way — by stopping your immune system from damaging these blood cells. Fostamatinib (Tavalisse) is a newer drug for adults with ITP who haven't improved enough on other treatments. Children shouldn't take Tavalisse because it can affect their growth.  

If medicine doesn't improve your platelet count, you might need surgery to remove your spleen, called splenectomy. The spleen is part of your immune system. In ITP, it plays a big role in destroying platelets. Removing the spleen leads to long-term remission in about 60% of people who have this surgery. But without a spleen you could be at higher risk for serious infections.

As treatments for ITP have improved, so have outcomes. But survival rates haven't improved equally in everyone with this condition. While deaths from ITP are down in white people, the outcome hasn't improved in people of color. One reason could be a lack of access to care. Also, darker skin might hide bruising and bleeding, leading to fewer people of color seeing a doctor for a diagnosis.

People of lower incomes also have worse survival rates. And those who live in rural areas are less likely to receive treatment from a hematologist than people who live in cities and suburbs. These disparities likely have to do with a lack of access to specialized care.

ITP can be with you for many years. You may need to take medicine long-term to keep up your platelet count. During treatment you can do a few things to stay healthy and prevent bruising and bleeding.

Tips for living with ITP

Be extra careful when doing any activities that could make you bruise or bleed. Avoid contact sports like football, ice hockey, or rugby. Wear a helmet when you ride a bike, skateboard, or motorcycle. And always put on your seatbelt in the car.

Use a soft toothbrush to keep your gums from bleeding. Shave with an electric razor. Be extra careful when using a knife, nail clippers, or other sharp tools. Wear shoes with thick soles when you go outside to prevent cuts on your feet.

Certain medicines and supplements make you more likely to bleed. These include: 

  • Aspirin
  • Ibuprofen 
  • Naproxen
  • Ginkgo biloba
  • Ginseng
  • St. John's wort

Check with your doctor before you take any new medicine or supplement.

Life with a rare chronic condition can be very stressful. Mind-body techniques like meditation, yoga, or guided imagery can help you relax.

Where to find support

When you need extra help, turn to family, friends, and your treatment team. You can also get help from the Platelet Disorder Support Association (PDSA). This organization offers support groups, health insurance assistance, and free educational materials on ITP. 

Caring for someone with ITP can be almost as stressful as having the condition yourself. You have to juggle your own responsibilities, like career and family, while taking care of a loved one with a chronic condition.

To avoid burnout, make sure to also take care of yourself. 

  • Eat a well-balanced diet
  • Get enough sleep
  • Exercise at least 5 days a week
  • Use healthy stress-relief techniques like meditation or writing in a journal
  • Spend time with your friends
  • Take time to focus on yourself 

PDSA also offers support services for caregivers. The Caregiver Action Network and Lotsa Helping Hands are other organizations that offer caregivers assistance.

An ITP diagnosis could make you wonder about your future. Will this disease be with you for a lifetime? Could it shorten your life? Everyone's condition is unique, but overall, ITP has a good outlook thanks to improved treatments.

Can ITP be cured?

There is no cure for ITP. But corticosteroids and other medicines increase platelet counts and improve symptoms in most people.

What to expect with ITP

Acute ITP usually gets better within a few weeks or months. Chronic ITP can last for many years. Symptoms may come and go, but the condition is usually not life-threatening. You'll need medications or other treatments long-term to keep your platelet count up and prevent serious bleeding.

ITP can cause severe bleeding without treatment. The most serious complication is bleeding in the brain, which could be life-threatening.

ITP in pregnancy

You can get pregnant and have a healthy baby with ITP, but your hematologist and obstetrician will monitor you more closely during pregnancy. Some of the medicines that stimulate platelet production aren't safe for your baby, so you may need to switch to a different drug until after you deliver.

Because your platelet count can drop in the third trimester and cause serious bleeding, many doctors recommend bringing your platelet count up to 50,000 or higher close to your due date. Most babies whose mothers have ITP aren't born with low platelet counts.

ITP is a rare blood disorder that causes low platelet counts and an increased risk for bruising and bleeding. Chronic ITP can last for many years, and you may have to stay on treatment for the long term to prevent complications like severe bleeding. Corticosteroids are the main treatment for ITP. If they don't work, medicines that increase platelet production or stop your immune system from attacking platelets may help.

Is ITP a serious disease?

For most people, ITP isn't serious. Acute ITP often goes away on its own in a few weeks or months. Chronic ITP can last for many years, but there are treatments to boost platelet counts and prevent bleeding and bruising. Most people can eventually stop the medicine and still maintain a healthy platelet count.

What autoimmune diseases are associated with immune thrombocytopenia?

Autoimmune diseases are one possible cause of secondary ITP. Lupus, antiphospholipid antibody syndrome (APS), Hashimoto's disease, and Evans syndrome are some of the autoimmune diseases that cause ITP.

Is ITP related to leukemia?

ITP and leukemia both affect blood cells. ITP may be confused with leukemia because they have similar symptoms, but it's not cancer. ITP doesn't turn into leukemia, but people with chronic lymphocytic leukemia (CLL) are more likely to have ITP. 

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