What is ITP?
Immune thrombocytopenia [throm-boh-sahy-tuh-pee-nee-uh], also called ITP, is a condition in which your blood does not have enough platelets. Platelets are components found in blood that help form clots to stop bleeding and bruising.
How can ITP affect me?
There are several ways ITP can affect you, causing your platelets to drop to very low levels and leading to symptoms of ITP. This happens because:
The immune system mistakenly attacks and destroys healthy platelets, which grow in the bone marrow.
The body doesn’t create enough platelets to make up for the platelet destruction.
Types of ITP
There are 3 types of ITP: Acute, persistent, and chronic
Acute ITP, also known as short-term or temporary ITP, usually lasts less than 3 months. It mainly occurs in children and often goes away on its own within a few weeks or months.
If it has been between 3 and 12 months since your diagnosis, your condition is considered persistent.
Chronic ITP, also known as long-term ITP, lasts 12 months or longer and mostly affects adults. It can last for many years and may require continued treatment.
Seven of 10 children with acute ITP will see it go away within 12 months, with or without treatment. For a small number of children, ITP becomes chronic.
Approximately 5 of 10 adults with ITP have persistent or chronic ITP despite treatment.
Even though an ITP diagnosis can be overwhelming, it's important to keep in mind that:
It can be managed with treatment.
Talking with your doctor can help determine which option may be right for you.
You’re not alone. There are online communities with patients just like you where you can go for answers to questions as well as support.
What are your treatment goals?
A group of medical experts from around the world published the International Consensus Report (ICR), which provides up-to-date information about how to best manage ITP.
The ICR also provides recommendations for the goals of treatment, which are focused on improving both your daily life and condition. Beyond controlling your platelet count, your personal goals are something you should discuss with your doctor based on what matters to you—whether it’s improving your fatigue, managing side effects, or being able to travel or pursue your passions.
As you learn about your treatment options and have discussions with your doctor, it may be helpful for you to keep these goals from the ICR in mind.
ICR-recommended treatment goals
Talk to your doctor if your current treatment does not help you meet your goals. Other treatment options may be available.
Are there guidelines for how to treat ITP?
The American Society of Hematology (ASH) is another major group of experts that doctors around the world look to for guidance about treating ITP. ASH created a set of ITP treatment guidelines based on the latest evidence. Your doctor may consult these before discussing your treatment options with you.
Keep reading to get the facts about treatment and guidelines so you can work with your doctor to find the right option for you.
Getting started on treatment
Corticosteroids [kor-tuh-koh-steh-roydz] (commonly referred to as “steroids”) are usually the first treatment people receive for periods of 6 weeks or less after being diagnosed with ITP.
Corticosteroids may help increase the number of platelets in your blood (also referred to as “platelet count”). However, generally, platelet levels only stay high without treatment (remission) for less than 2 of 10 people who take them.
As many as 8 of 10 people may not experience remission with corticosteroids. You should also know that corticosteroids are known to cause many side effects, including weight gain, sleep and mood issues, stomach irritation, high blood sugar, effects on mental health, high blood pressure, ulcers, glaucoma, and muscle and bone diseases.
For these reasons, ASH recently changed its treatment guidelines to recommend people only be treated with corticosteroids for periods of 6 weeks or less.
Intravenous immunoglobulin [in-truh-vee-nuhs i-myoo-no-glaa-byuh-luhn], or IVIg, is a treatment option that may be used to quickly raise platelet counts in people with newly diagnosed ITP.
IVIg is an infusion given with a needle and requires sitting still for some time in an infusion center while the medicine goes into the veins.
There are several reasons why you and your doctor may discuss changing your treatment:
- Corticosteroids do not work for you
- Corticosteroids worked for you, but your
platelet counts dropped once treatment
stopped. In this case, your doctor may try
another course of steroids or consider a different
kind of treatment
- Treatment or its side effects interfere with your daily life
- Your symptoms are not addressed by your current treatment
There are several types of available treatments you and your doctor may consider next.
If you stop taking corticosteroids for any of the reasons mentioned above but prefer a medication that offers long-lasting control of your platelet counts, the ASH treatment guidelines suggest a type of medication called a TPO-RA (short for thrombopoietin [throm-bo-poy-eh-tin] receptor agonist).
TPO-RAs are proven to boost the number of platelets in your body and keep them high for long periods of time—in some cases, several years. TPO-RAs can also help reduce bleeding.
ASH guidelines suggest 2 options: An oral pill you take once every day or an injection you get once a week at your doctor’s office. The option you and your doctor choose depends on how you prefer to take your medication.
Another option you and your doctor may consider after corticosteroids is a treatment known as a monoclonal antibody, which is given by infusion. An infusion is having your medicine administered through a needle placed directly into a vein and must be done at a treatment center or hospital.
Monoclonal antibodies work by suppressing how your immune system works—similar to corticosteroids. This can help increase your platelet counts. You would take several infusions before you stop taking treatment and wait to see if it worked for you.
ASH encourages physicians to incorporate shared decision making into treatment choices. You and your doctor should decide whether to take a TPO-RA or monoclonal antibody based on your preferences and treatment goals.
You and your doctor may discuss removing your spleen in a surgery called a splenectomy [spluh-nek-tuh-mee].
Your spleen helps your immune system fight infections. When you have ITP, your immune system fights platelets by mistake. By removing the spleen, your body may destroy fewer platelets. However, there is no test to show whether or not a splenectomy would work for you. Once the spleen is removed, the procedure cannot be reversed. As with any surgical procedure, you should consider the risks carefully and discuss your concerns with your doctor.
ASH treatment guidelines recommend waiting at least 1 full year after you are diagnosed before considering surgery for spleen removal.
Working together with your doctor
When you've been recently diagnosed with ITP and are still in the acute phase of your condition, you may find that taking several short rounds of corticosteroids can be exhausting and even interfere with your daily life. For patients who move to the chronic stage of ITP, it is important to remember that you may require longer-term treatment. This means that you should consider how your treatment options will impact your daily life, address your symptoms, and help control your ITP.
While the ASH guidelines provide doctors with guidance for treating ITP, they also highlight that you and your doctor should discuss all of your options and work together to decide which treatment is right for your personal goals. It is important to be vocal about what matters to you.
Use the interactive treatment tool below to help start a conversation with your doctor about your preferences when it comes to ITP treatments.
- Review the information regarding different ITP treatment options.
- After reviewing the chart, determine which treatment options you are interested in learning more about to receive suggested conversation starters that may be helpful for your discussion with your doctor.
- Print your conversation starters and bring them to your next appointment to discuss your treatment preference or complete this exercise together with your doctor at your next visit. It is important to work with your doctor to find a treatment that helps you achieve what is important to you.
NEXT: Learn about the ITP journey