Your care pathway
If you’re just starting your treatment, the uncertainty that comes with the ITP diagnosis will be stressful. “How long must I have therapy? Can I heal? What if it doesn’t work?”
To remove some of the stress and uncertainty, we must take a step back and take a look at what an example of a care pathway1 looks like.
1. Diagnosis
The process of confirming an ITP diagnosis can be long and frustrating and can involve many investigations.
ITP is diagnosed by exclusion. This means that the diagnosis is not made until all other possible causes of a significant reduction of the number of platelets are excluded.
If you have just had the diagnosis ITP, it is normal to be afraid and not know what to expect.
2. Observation
If your platelet count is 30 x 109/l or more, and your symptoms are mild, your doctor can wait to see if your condition improves on its own, without prescribing any treatment.
3. First-line treatment
If the bleeding becomes severe or if your platelet count drops, corticosteroids are usually the first medication that are administered for a period of maximum 6 to 8 weeks.
These substances are related to cortisone, a hormone in the body that regulates the immune system. Corticosteroids prevent the degradation of platelets.
In case of severe bleeding, additional therapeutic measures must be considered, such as the administration of immunoglobulins. Once your platelet count has increased, your doctor will gradually taper the corticosteroids. At the same time, he/she will continue to monitor your platelet count.
4. Second-line treatment
Not all patients achieve the expected results from the corticosteroid treatment or, if the treatment initially worked, a relapse can occur later.
Other possible treatments should then be considered:
- Agonists of the receptors of thrombopoietin are substances that can stimulate the formation of new platelets in the bone marrow. There are 2 different forms: an oral tablet to be taken every day or an injection that must be given every week. As the patient, you decide in consultation with your treating physician what form is the most appropriate for you.
- Anti-CD20 medicines are known as immunosuppressants; they prevent the production of antibodies that destroy platelets.
- Splenectomy is the surgical removal of the spleen. By removing the spleen, your body can destroy fewer platelets. However, there is no test to show whether a splenectomy would work for you. Once the spleen is removed, the procedure cannot be reversed. As with any surgery, you must carefully consider the risks and discuss possible concerns with your doctor. The new Belgian guidelines recommend waiting at least 1 year after the diagnosis before considering a splenectomy.
- Onkopedia Leitlinie ITP [Directive Onkopedia sur le PTI], https://www.onkopedia.com/de/onkopedia/guidelines/ immunthrombozytopenie-itp/@@guideline/html/index.html (last consulted on 31.03.2020).