Managing 5 Challenges of Immune Thrombocytopenia
Health ConditionsRare DiseasesImmune Thrombocytopenia

5 Challenges of Living With Immune Thrombocytopenia — and How to Manage Them

This blood-clotting disorder can affect your daily life, but these strategies can help you minimize problems and better manage ITP.
5 Challenges of Living With Immune Thrombocytopenia — and How to Manage Them
Afry Harvy/iStock; Everyday Health
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Published on February 18, 2025
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Whether you’ve been living with immune thrombocytopenia (ITP) for months or years, there’s no denying that the condition can throw some curveballs your way. Part of that is because ITP can cause symptoms such as bleeding and fatigue, which can make it difficult to go about your daily life.

About half of people with ITP say the condition affects their emotional and psychological health, and about one-third of them say it causes them to feel self-conscious about their appearance. Moreover, many of them believe their doctor thinks they feel better than they actually do.

The first step in minimizing ITP symptoms is to treat the condition with medication. But there are also lifestyle strategies you can try to manage these challenges:

1. Extreme Fatigue

As with most autoimmune diseases, fatigue can be a problem, says Alexandra Wolanskyj-Spinner, MD, a hematologist at Mayo Clinic in Rochester, Minnesota. “The root of fatigue is inflammation. When your body is inflamed, the cytokines that are released in blood circulation will lead to fatigue,” she says.

Steroids, which are a common first-line treatment for ITP, can also cause fatigue, she says. They can not only have an impact on sleep, causing insomnia, but also worsen your mood and cause depression, which can also contribute to fatigue.

While it may sound counterintuitive, be more active. A lack of physical activity can cause poor sleep, says Dr. Wolanskyj-Spinner. Try to keep your sleep habits consistent, too.

2. Heavy Menstrual Bleeding

ITP can also affect the menstrual cycle. In the United States, about 70 percent of people with ITP are women, and 70 percent of those women were under age 40 when they were diagnosed.

Heavy menstrual bleeding can mean you have to change tampons every two hours, your cycle lasts more than a week, or you pass blood clots larger than a quarter.

 This can cause an iron deficiency, a symptom of ITP that’s often underdiagnosed, says James Martin, MD, a hematologist at Cleveland Clinic. “Aggressive treatment of iron deficiency is important,” he says, because it can exacerbate fatigue.
Besides causing anemia, heavy menstrual bleeding can affect your overall quality of life, including your social life, mental health, work life, and family time.

Treatment options to relieve heavy bleeding include hormonal therapy, endometrial ablation (surgery to destroy or remove the lining of the uterus), and hysterectomy, but these treatments can permanently prevent pregnancy. Other possible options are oral contraceptives, intrauterine devices, and antifibrinolytic medications (drugs that prevent clots from breaking down).

An important piece of managing this challenge is open communication between you, your hematologist, and your gynecologist to discuss the best treatment options for you, says Dr. Martin. You can also ask your doctor whether you should:

  • Take iron supplements to prevent anemia
  • Eat more iron-rich foods, such as beans, beef, and spinach
  • Drink more water, which can help boost blood volume

3. Physical Activity Restrictions

You may have routinely enjoyed sports and physical activities before your ITP diagnosis, but you may need to give them up if they carry a high risk of injury or bleeding.

“No contact sports, no horseback riding — nothing that could end in traumatic injury,” says Martin. He uses his patients’ platelet numbers as his guide for when to suggest limiting activity and when to “loosen the reins.”

That doesn’t mean you can’t be active in other ways, though: He suggests generally safer activities, such as walking, running, tennis, and swimming, for people with ITP.

4. Anxiety or Depression

Fear of an injury that results in uncontrolled bleeding can cause anxiety for people with ITP. One survey reported that 47 percent of people with ITP had a fear of bleeding that interfered with work, family life, or social life.

Mood changes and depression can result from having to give up a favorite activity that poses a bleeding risk. Steroids are also known to affect mood and could be the root of anxiety.

These feelings are real. But you can also take steps toward managing emotions, so you can have a healthy approach to living with ITP. Some strategies include:

  • Physical Activity Even a brief walk outside can lift your mood. Any safe physical activity that you enjoy is worth the time.
  • A Balanced Diet While quick, processed foods are easy and seem comforting when you’re dealing with uncomfortable emotions, healthier eating options are better for your physical and mental well-being.
  • Positive Thinking Staying positive can help your outlook and have a positive impact on your health.
  • Cognitive Behavioral Therapy Talk to a mental health practitioner if your feelings of anxiety and depression persist, says Martin. Cognitive behavioral therapy, or CBT, has been shown to be particularly beneficial for improving stress and mood for people with chronic diseases and may also be helpful for ITP.

5. Frequent Medical Appointments

It’s common for people with ITP to feel overburdened by having to regularly go to doctor’s appointments to monitor platelets and receive intravenous infusions. For some people, these medical visits may be as often as multiple times a week.

If frequent medical visits are affecting your daily life, be sure to talk to your doctor about your treatment plan. ITP treatments have evolved dramatically over the past 15 years, particularly with the emergence of targeted medications that appear to be more effective and have fewer side effects, according to a review.

Needing to take time for medical appointments can particularly affect work performance, and many people with ITP say the condition makes it difficult to do their job. According to a survey of people with chronic ITP, many reported having to consider cutting back their hours or responsibilities.

If ITP is having an impact on your ability to work, says Martin, consider talking to your employer about accommodations. “I encourage them to speak to their employer about their need for treatment, so they are able to focus on their health.”

The Takeaway

  • Immune thrombocytopenia (ITP) is treatable, but the condition can still cause some challenges that can affect day-to-day life.
  • ITP-related problems, such as fatigue, activity restriction, and heavy menstrual bleeding, can pose challenges.
  • Work with your doctor and ITP care team to find ways to improve symptoms and your quality of life.
EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Resources
  1. Immune Thrombocytopenia (ITP). Mayo Clinic. June 8, 2023.
  2. Cooper N et al. Immune Thrombocytopenia (ITP) World Impact Survey (I-WISh): Impact of ITP on Health-Related Quality of Life. American Journal of Hematology. February 2021.
  3. Immune Thrombocytopenia. University of California in San Francisco Health.
  4. Heavy Menstrual Bleeding: Symptoms & Causes. Mayo Clinic. August 30, 2023.
  5. Van Dijk WEM et al. Menstrual Problems in Chronic Immune Thrombocytopenia: A Monthly Challenge ‐ a Cohort Study and Review. British Journal of Haematology. August 2022.
  6. Heavy Menstrual Bleeding: Diagnosis & Treatment. Mayo Clinic. August 30, 2023.
  7. Bussel JB et al. The Burden of Disease and IMPACT of Immune Thrombocytopenia (ITP) on Patients: Results from an ITP Survey. Blood. November 13, 2019.
  8. Van Dijk WEM et al. Possible Targets to Reduce Fatigue in Chronic Immune Thrombocytopenia Patients – an Explorative Study. TH Open. November 18, 2022.
  9. Jiang D et al. Changing Paradigms in ITP Management: Newer Tools for an Old Disease. Transfusion Medicine Reviews. October 2022.
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