If you’ve been diagnosed with Immune Thrombocytopenia (ITP), you probably have many questions – about symptoms, treatments, remission, and what to expect in the long run.
You’re not alone! Patients often ask about the causes of ITP, whether it can be cured, how to manage fatigue, and if lifestyle changes can help. Understanding your condition is key to making informed decisions about your health.
We’ve compiled answers to some of the most frequently asked questions to help you feel more confident in managing ITP.
Immune Thrombocytopenia (ITP) is an acquired autoimmune bleeding disorder characterised by a low platelet count resulting from platelet destruction and/or impaired platelet production.
Many of the treatments and therapies available for Immune Thrombocytopenia (ITP) can assist with stabilising platelet counts and reduce active bleeding.
Some of these therapies can induce remission from ITP, but only a minority will be cured with existing treatment. Improving cure rates for ITP is the goal of several current research trials.
It is estimated that the prevalence of ITP is 1 in every 10,000 people across Australia and New Zealand. ITP is a rare disease, which is defined as a disease frequency of <1 person in every 5,000 people.
There is no single test currently available to determine that a person has ITP as there are many causes for a low platelet count. The diagnosis includes a thorough personal and family medical history, physical examination and various blood tests to rule out other reasons for a low platelet count, including a blood film examination.
Platelets are produced in the bone marrow along with red and white blood cells. When released into the blood the cells circulate within the blood and bind together when they receive a signal indicating that there are damaged blood vessels. For example, when you get a cut the platelets bind to the injured site resulting in the first stages of a clot and then the bleeding stops.
The most common symptoms of Immune Thrombocytopenia can include spontaneous bleeding and bruising, prolonged bleeding, petechiae (skin rash of small red dots) bleeding gums, wet blood blisters in the mouth, heavy or abnormal menstruation, nose bleeds, fatigue, brain fog, anxiety and other mental health concerns.
The treatment for ITP is different in each country/region, however in Australia and New Zealand, first line treatments include corticosteroids and IVIg. If these treatments fail to work, then second line treatments include TPORAs, Rituximab, combination therapies and in some cases, Splenectomy. Review the current treatment consensus guidelines for more information.
While there’s no proven way to naturally increase platelets in ITP, maintaining a healthy lifestyle and diet may support overall health. Always consult your doctor for medical advice.
The exact cause is unknown, but it’s believed to be an autoimmune reaction in which the body mistakenly attacks its own platelets or has impaired platelet production.
Fatigue can be a symptom of ITP, possibly due to the body’s ongoing immune response or as a side effect of treatments. Fatigue was reported in the I-WISh study, conducted in 14 countries and completed by 1400 ITP adult patients and 480 healthcare professionals.
Generally, people who have had, or currently have Immune Thrombocytopenia are not eligible to donate blood.
The first description of ITP dates back to 1808 when Robert Willan where ITP was described as “Purpura haemorhagica occurs at every period of life, and chiefly affects persons of a weak and delicate habit. Women and boys appear to be most liable to it: in the latter, the haemorrhage usually takes place from the nose”.
ITP was reported to be due to “a sedentary mode of life, poor diet, impure air, and anxiety of mind, are the usual exciting causes of this disease”.
And to treat the disease “we recommend moderate exercise in the open air, a generous diet and the free use of wine …”
Willan’s observations and treatment recommendations are not necessarily fully shared by modern haematologists!
Some people experience remission, while others may have chronic ITP requiring ongoing management.
Complete remission is defined as a response to treatment with platelets increasing to ≥100. Note that a normal platelet count is around 150-400, so the goal of treatment is not necessarily to restore normality. Remission is the first step to cure (cure is a permanent remission) but in many cases remission will be lost as the platelet count falls.
Many women with ITP can have successful pregnancies, however it is recommended that you discuss your plans prior to pregnancy with your treating doctor and ensuring that your doctor and obstetrician are liaise closely as you are monitored throughout your pregnancy.
Do you have other questions you’d like to ask about ITP?
Get in touch with us at info@ITPAustralia.org.au, and we can contact our knowledgeable Medical Advisors and help answer your questions.