ITP 101

What's going on

Have you experienced 1 or more of these?

  • Unexplained bruises
  • Tiny red or purple dots on your skin
  • Bleeding too easily from your gums, nose, or cuts
  • Bleeding that’s hard to stop
  • Blood in your stool or urine
  • A heavier than usual period flow (females) 

Your doctor may help you understand what’s causing this.

 

So many tests, not enough answers.

ITP is a chronic low blood platelet disorder usually diagnosed by process of elimination. There is no specific ITP test and your doctors need to confirm that something else isn’t causing your low platelet count before they can make a diagnosis.

It can be a lifelong disease and is manageable with treatment.

You may need to meet with different types of doctors before the best treatment is found.

You may be feeling uncertain during this process, but it’s important not to jump to any conclusions while your health care team narrows down your diagnosis. This is all to ensure that you’re getting the right treatment and help you manage your disease.

 

Meet your health care team

  • Primary care doctor— The first stop on your journey
  • Hematologist— A blood specialist
  • Social worker/therapist— Because the impact of your low blood platelet disorder is not only physical
  • Nursing staff— Nurses and other health professionals will help you navigate your journey

General guidelines to platelet count ranges

aIn patients, treatment is recommended for platelet counts <30,000 mm3  and should be adjusted to maintain counts >50,000 mm3.
bPrimary treatment options for ITP usually include corticosteroids, immunoglobulin therapy, or splenectomy (surgery to remove the spleen).

You and your doctor will discuss your platelet count goals. Everyone’s target count is unique to them. That’s why it’s important to keep an eye on your platelet count and think about the impact those levels have on how you feel day to day.

ITP and your body

Types of ITP

Acute ITP

This is a type of ITP that might go away on its own. It can last up to 6 months. Potential treatments are steroids and/or infusions such as intravenous immunoglobulin (IVIg).

If your platelet count and symptoms are stable, your doctor may choose to watch and wait to see if your ITP goes away. If they’re unstable, it’s time to move on to second-line treatments for chronic ITP.

Chronic ITP

This is ITP that lasts 6 months or longer. Treatments include steroids, platelet growth factors like a thrombopoietin receptor agonist, injections, or chemotherapy. If a specific treatment is working and your platelet count and symptoms are stable, you can maintain that course of therapy. If your counts aren’t stable or if your treatment side effects are too bothersome, your doctor may recommend a different therapy.

If your chronic ITP is severe, your doctor may consider surgery to remove your spleen. In chronic ITP, platelets are removed from the blood and then destroyed or trapped in the spleen. By removing the spleen, more platelets remain in the blood.

 

Treatments for ITP

The goals of ITP treatment are to prevent bleeding and maintain your platelet count at a safe level with minimal side effects. It’s not unusual for a doctor to try several different treatments for ITP to find what works best.

Take a look below to see how different treatments work.

What's it called?How does this treat your ITP?
Acute or Chronic ITP 

Corticosteroids, also called steroids

Oral tablets or injection

Work on the immune system to raise the number of platelets in the blood. This can help stop or prevent bleeding. When a person stops taking steroids, these effects may go away.

Intravenous gamma globulin (IVIg)

IV infusion (into a vein)

Temporarily raises platelet levels.

Anti-D immunoglobulin (anti-D)

IV infusion

Prevents the spleen from removing platelets. Usually, the results are only temporary.

Chronic ITP 

Splenectomy

Surgery

May raise the platelet count by removing the spleen. The spleen is the main place where platelets are destroyed.

Rituximab

Chemotherapy

Reduces the amount of damage the immune system does to platelets. This may help raise platelet levels. As of now, the FDA has not approved this treatment for ITP.

Immunosuppressant

IV infusion or oral tablets

Works to inhibit the body's immune system, which is overactive in ITP.

Platelet growth factors

Oral tablets or subcutaneous (under the skin) injections

Work by helping your bone marrow produce more platelets.


Managing your ITP

Finding the right treatment and taking your medicine as prescribed will help you manage your chronic ITP. However, you still may have to deal with symptoms, especially if you try different treatments to find the one that best gets your ITP under control. Make sure you keep open communication with your health team and when in doubt, don’t be shy: Just ask.

Pay attention to how your body responds to treatment because every patient has his or her own response. Tracking your platelet levels and symptoms can be very useful. Your doctor uses this information to develop your treatment regimen. Once you start writing down your platelet counts or tracking them in a smartphone app, patterns may emerge that can help you and your doctor find the best platelet levels for you and help gauge the impact of your treatment. We have designed a platelet tracker that is available at the back of our brochure and can get you started.

Setting personal health goals

While your health care team may be focused on helping you reach and maintain a certain platelet count, your goal may be something more personal, like being able to return to a favorite activity without fear of injury. Whatever your personal goals, sharing them with your health care team is a helpful first step toward achieving them.

Communicating with your health care team

Much of the information your providers need to evaluate your health comes from you. The words you choose when describing how you feel are important. Listening, making sure you understand what’s being said to you, and asking follow-up questions for clarification are also essential parts of interacting with your health care team. If you can communicate what matters most to you, the conversations you have with your health care team may become more effective.

My ITP Life: Reflecting on Your ITP Treatment

Are you getting what you need from those important conversations?

Learn more about your communication style and find ways to improve conversations with your health care team.

treatment icon

Is your current treatment plan helping you reach your goal?

Lab results can help identify how well your ITP treatment plan is working to manage your platelet levels. They are not, however, the only measures that matter. You and your doctor should consider clinical and personal factors, such as those described below. A treatment plan that considers both perspectives may lead to better overall health.

Clinical Considerations

  • Platelet counts: You and your doctor can use the platelet tracker to monitor your counts so you can tell if your body is responding well to treatment
  • Current symptoms: Check your body for signs like petechiae (a rash of reddish-purple spots caused by bleeding into the skin), nosebleeds, and bruising

Personal Considerations

  • What are your goals for your health (eg, have more energy, be more active)?
  • What are your personal goals (eg, get back to walking, swimming, going outdoors with your family)?
  • Are you currently meeting these goals?

How does your current treatment plan measure up?

Have you reflected on your treatment plan and how it's working lately? Sharing this information with your doctor may help you start a conversation about whether your current treatment plan is meeting your needs

My ITP Life: Reflecting on Your ITP Treatment

Have trouble asking for help?

Do you find it tough to find someone to help when you need it? Get help identifying the best people to help you and how to reach out to them when you need a hand.

Daily ITP: Yes, you can!

Q: Can I still brush my teeth with a toothbrush?

A: Yes, you can!

Brush twice a day using a softer toothbrush. Use interdental brushes to remove plaque and food from between your teeth. They’re softer than dental floss.

 

 

 

Q: Can I move around the house without getting injured?

A: Yes, you can!

There are simple ways you can make your living space more ITP friendly. Cut down on clutter on the floor that might cause you to trip, get a rubber mat for your shower, and avoid rugs that slide around on the floor.

 

 

Q: Can I move around outside safely?

A: Yes, you can!

Just be more aware of your surroundings. Don’t “text and walk,” make sure you can see around and above any items you might be carrying, and wear helmets and pads when the activity calls for them.

 

 

 

Q: Can I avoid suffering from constant fatigue?

A: Yes, you can!

Keep your energy level up with small snacks throughout the day! Also make sure to avoid “sleep debt,” in which a few nights of bad sleep can cut down on sleep’s effectiveness later in the week. Try going to sleep a half hour earlier each day to catch up.

Tips for talking about ITP

Because you may not always show obvious signs of illness, like bruising, your family and friends may not fully realize the impact that ITP has on your life. This may make it hard to get the support you need. Sharing your experience and talking about how you feel may help loved ones better understand your life with ITP.

Unsure how to start? Try this activity. Each of the following is a common question people with ITP may be asked. Click on a question to reveal a possible response. Remember, your individual experience with ITP is unique, so use these suggestions as a guide to help you find an explanation that works for you.

I have a disease called ITP that causes my immune system to destroy the platelets in my blood. Platelets are necessary to make blood clot, so not having enough of them means I bruise more easily. ITP also puts me at risk for internal bleeding.

Sometimes I have to miss work for doctor visits and lab tests. And when my platelet count is especially low, I am extremely tired, which can make it difficult to function.

I have to avoid situations in which I could get hurt because I have an immune disease called ITP. ITP causes a shortage of platelets in my blood. This makes it harder for my blood to clot and puts me at risk for internal bleeding. I may not be able to do all of the things we used to. Maybe we can find some new ways to spend time together.

Don’t worry, they don’t hurt! What you see are tiny bleeds beneath my skin called petechiae. I have ITP, a disease that causes my immune system to destroy the platelets in my blood. Because platelets are necessary for blood clotting, I bleed more easily. Even the slightest bump can cause bruising and bleeding, so I have to be really careful to avoid injury.

I know I haven’t been myself. I was diagnosed with ITP a few months ago. It’s a disease that makes my immune system destroy the platelets in my blood. This means I bruise and bleed more easily and am at risk for internal bleeding. Sometimes my medicines have side effects that make me feel irritable or tired. Learning how to live with this has been difficult, and sometimes it still feels overwhelming.

ITP Resources

 

My ITP Life Brochure

Learn even more about how ITP can impact your life. Our Let’s Move Forward brochure also includes our platelet tracker to help you follow your treatment.

DOWNLOAD PDF

 

 

My ITP Life Platelet Tracker

This download is just for our platelet tracker to help you follow your treatment.

DOWNLOAD PDF

 

My ITP Life: Understanding ITP

Important information about ITP in an easy-to-understand format.

DOWNLOAD PDF

 

 

My ITP Life: Chronic ITP and Your Child

Learn about chronic ITP and how it can affect your child with this simple resource.

DOWNLOAD PDF

 

 

My ITP Life: Discussing Your Needs With Your Doctor

Identify how ITP is affecting your life and what’s important to you in a medicine for ITP.

DOWNLOAD PDF

 

 

My ITP Life: Finding Partners Who Can Help

Find a person to partner with and provide help when you need it.

DOWNLOAD PDF

 

 

My ITP Life: Developing Your Communication Style

Take this short quiz to find out your communication style and how it affects conversations with your doctor.

DOWNLOAD PDF

 

 

My ITP Life: Reflecting on Your ITP Treatment

Review your treatment plan and how well it fits what you’re looking for in a treatment for ITP.

DOWNLOAD PDF

 

 

My ITP Life: How Are You Managing Side Effects?

Use this activity to determine how much of an influence side effects are having on your daily life.

DOWNLOAD PDF

 

 

Find more ITP support

There are many resources available to help you learn more and connect with others who are living with ITP.

 

American Society of Hematology

www.hematology.org

Furthering the understanding, diagnosis, treatment, and prevention of certain blood and bone disorders.

 

National Heart, Lung, and Blood Institute

www.nhlbi.nih.gov

NHLBI promotes the prevention and treatment of heart, lung, and blood diseases.

 

Platelet Disorder Support Association

www.pdsa.org

A helpful resource for ITP education, advocacy, research, and support.

 

National Organization for Rare Disorders

www.rarediseases.org

Providing a unified voice for those with rare diseases and their caregivers, seeking to help them so they won’t have to fight that battle alone.

 

ITP and Me

www.itpandme.com

Providing medical support for ITP patients and also emotional, lifestyle, and daily ITP guidance.

 

Well Spouse® Association

www.wellspouse.org

Offering peer support and education for individuals caring for a chronically ill and/or disabled spouse/partner.

 

The organizations and websites listed on this page are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. As such, Novartis Pharmaceuticals Corporation makes no representation as to the accuracy or any other aspect of the information supplied by these organizations or contained in these websites.

ITP Dictionary

Autoimmune condition

A condition in which the body’s immune system attacks and destroys healthy body tissue

Chemotherapy

While usually used to treat cancer, chemotherapy may be effective for some cITP patients since it can help treat abnormalities with your immune system

Immune thrombocytopenia (ITP)

Thrombocytopenia that is a result of destruction of platelets by the immune system

Immunosuppressant

A drug that lowers the activity of the immune system

Infusions/Intravenous

Medicine given through a needle or tube inserted into a vein

Oncologist

A physician who treats cancer. He or she may become involved in your treatment while your doctor narrows down your diagnosis

Petechiae

Small red or purple spots caused by bleeding into the skin

Platelet

A blood cell fragment that helps wounds heal by forming blood clots

Spleen

An organ that helps your body fight infection and keep fluids in balance

Steroids

Steroids known as corticosteroids are drugs that lower stresses and inflammation caused by disease or illness

Thrombocytopenia

A blood disorder in which your blood doesn’t clot the way it should because the number of blood cell fragments called platelets is too low

Thrombopoietin receptor agonist

An ITP treatment that stimulates platelet production. It is usually used after initial treatments have been unsuccessful