Immune thrombocytopenia (ITP) is a rare autoimmune disorder characterized by a low platelet count, which can lead to abnormal bleeding and bruising. This condition affects individuals of all ages, and can cause unique physical and emotional challenges. This article delves into the patient journey of individuals with ITP, exploring the diagnosis process, treatment options, and the multidisciplinary approach necessary for managing this complex disorder.

Understanding immune thrombocytopenia

Immune thrombocytopenia occurs when the immune system mistakenly targets and destroys platelets, the blood cells responsible for clotting. While the exact cause of ITP is unknown, it is believed to arise from an immune system malfunction. The condition can occur suddenly (acute ITP) or persist over a longer period (chronic ITP), with symptoms ranging from mild bruising and nosebleeds to severe bleeding.

On Inspire, one member shared:

“I had my first ITP episode 20 years ago along with a blood clot. I usually get ITP around the time I get blood clots. I had blood clots 4 different times. I also had hemolytic anemia and low white blood cell counts. I was told that I have the other systemic lupus that attacks my blood. My doctor only treats me now when I have a flare and when it starts to get better they slowly stop the treatment. In my case since the lupus attacked my blood, longtime use can be bad for me. It also takes a longtime for me to get over simple foods now. My doctor monitors my blood weekly.” Go to post

Diagnosis: unraveling the mystery

The journey for an ITP patient often begins with the recognition of unusual bleeding symptoms or a routine blood test revealing a low platelet count. After initial concern, individuals are referred to a hematologist, a specialist in blood disorders, who performs a comprehensive evaluation. This typically involves a detailed medical history, physical examination, and further laboratory tests to rule out other possible causes of low platelet count.

Currently, there is no standard diagnostic test for ITP. Therefore, the patient journey for getting an ITP diagnosis can be complex, involving sometimes long timelines and multiple care providers and specialists.

Treatment options: balancing the risks

The treatment approach for ITP varies depending on the severity of symptoms, age of the patient, and individual circumstances. In mild or acute cases, no immediate treatment may be required, and the condition is carefully monitored. However, for individuals with more severe or persistent symptoms, treatment options are available to help raise the platelet count and prevent bleeding complications.

Medications

Corticosteroids, such as prednisone, are a common treatment for ITP. They work by suppressing the immune system and reducing platelet destruction. Other medications, including immunoglobulins, thrombopoietin receptor agonists, and rituximab, may also be prescribed to stimulate platelet production or control the immune response.

Splenectomy

In some cases, surgical removal of the spleen may be recommended. The spleen plays a role in platelet destruction, and removing it can improve platelet count in certain patients.

Other treatments

Intravenous immunoglobulin (IVIG) infusions, plasmapheresis (a procedure to remove antibodies from the blood), and high-dose dexamethasone therapy are alternative treatments that may be utilized based on individual needs and response to other therapies.

Patient-reported outcome studies reveal ITP treatment preferences

Patient studies have been conducted to discover which treatment pathways patients feel most satisfied with. In a 2020 study, patients who were being treated with anti-CD20 agents reported the greatest overall satisfaction regarding control of their ITP (79%). Other patient attitudes gleaned from the study reveal that: 

• 76% of patients were satisfied with thrombopoietin receptor agonists

• 69% of patients were satisfied with immunoglobulin

• 53% of patients were satisfied with corticosteroids

• 38% of patients were satisfied with their splenectomy

While the above medications are used to treat ITP, some Inspire members have noted their observation that certain medications may trigger or worsen their ITP: 

“I just want to add certain drugs also trigger my ITP…Flu shot, depro shot, heparin, sulfa drug, tetracycline, Accutane. Those are the ones I am aware of so far. Bleeding nose, bleeding mouth, bleeding vagina, red spots on my skin and low platelets counts, my lowest was 2000, blood clot. Those are the symptoms.” Go to post

“Although our son does not have sarcoid, he developed ITP after being on a preventative antibiotic treatment…” Go to post

Multidisciplinary care: holistic management

Managing ITP effectively requires a multidisciplinary approach involving healthcare professionals from various fields. Hematologists, primary care physicians, nurses, and specialized nurses, as well as mental health professionals, play essential roles in the comprehensive care of ITP patients. Regular follow-up visits and ongoing communication are crucial to assess treatment response, manage side effects, and address emotional well-being.

As one Inspire member puts it:

“Be vigilant with your symptoms, be proactive and get to your doctor right away. I waited a couple of weeks before I suggested my doctor test me [for] lupus again. I'm so blessed I have a family doctor that listens and got me a rheumatologist right away…” Go to post

Living with ITP: challenges and coping strategies

Living with ITP can be physically and emotionally challenging. Patients often face the uncertainty of unpredictable bleeding episodes, lifestyle adjustments, and the potential impact on their daily activities. Support from healthcare providers, patient advocacy groups, and fellow patients can provide valuable information, coping strategies, and emotional support to navigate the ups and downs of the ITP journey.

One Inspire member describes their experience living with both lupus and ITP: 

“I have had lupus for about 20 years coming and going with various types of attacks. I now have ITP to the point where I am having to take [a bone marrow stimulant]. I have also had aortic valve replacement. Lupus has created a very difficult set of problems to deal with. I got a bad cold last winter that took me a very long time to recover from and that set even more problems in motion. It's so frustrating to deal with so many health issues at one time.” Go to post

If you have ITP, being informed about your treatment options is vital to managing your condition and maintaining long-term health. Understanding the different treatment pathways between acute and chronic ITP diagnoses can be another key to navigating your health journey. Learn more about the life expectancy of chronic ITP.

Disclaimer 

Member comments have been lightly edited for length and clarity. This content is for general informational purposes only and does not necessarily reflect the views and opinions of any organization or individual. The content should not be used as a substitute for professional medical advice, diagnosis, or treatment. Please consult your healthcare provider about any questions you may have regarding a medical condition.