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Discovering you have immune thrombocytopenia (ITP), a rare disorder that lowers your platelet counts, has likely left you searching for answers to questions, such as “Will this ever go away?” and “How likely is remission, and what can I expect in the long term?”
Many times, the answers to these questions aren’t straightforward. The likelihood of ITP going away or entering remission depends on several factors, including your age, how long you have had ITP, whether it is primary or secondary, and how it responds to treatment.
If you’ve been diagnosed with ITP, whether or not it goes away or spontaneously resolves has a lot to do with your age or stage in life. In other words, children experience spontaneous remission more often than adults.
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Children often have a short-lived version of ITP that is triggered by some sort of illness or infection. On the other hand, adults usually have a chronic form of ITP that may be with them for the rest of their lives, although it can go into remission. Doctors cannot predict remission with certainty, but factors such as age, disease duration, and treatment response may help estimate how likely it is.
In children, 80 percent to 90 percent, especially those between 1 and 6 years old, have ITP that goes away in several weeks, a few months, or even a year. Teens may have symptoms for three months to a year or longer. ITP that lasts three to 12 months is called persistent ITP, while ITP lasting more than 12 months is called chronic ITP.
In adults, the length of ITP varies. Adults are more likely than children to develop chronic ITP that lasts longer than 12 months. But some treatments can improve your health and increase your platelet count. It’s even possible for you to go into remission, but there’s no way to know for sure if this will happen or if the disease will recur later.
Because there’s no definitive way to diagnose ITP, healthcare providers consider it a diagnosis of exclusion. In other words, they will rule out other potential causes for your symptoms before diagnosing you with the condition.
Once you’re diagnosed with ITP, your healthcare provider will classify the type and stage of your disease. Here’s what you need to know about the types and phases.
Primary ITP doesn’t have a clear cause. Roughly 80 percent, or 8 out of 10 people, with ITP have primary ITP.
With secondary ITP, another condition is linked to the immune system attacking platelets. Possible causes include chronic infections, certain lymphoid cancers, and autoimmune diseases such as rheumatoid arthritis or systemic lupus erythematosus.
Some medicines can cause drug-induced immune thrombocytopenia, a separate form of immune-related low platelets. The suspected medicine usually needs to be identified and stopped under medical guidance.
ITP is divided into three phases based on how much time has passed since diagnosis. Here’s a closer look at those phases:
Newly diagnosed ITP — This phase represents the first three months after diagnosis. It’s possible that ITP is short term and platelet counts will return to normal. Many children fall in this phase.
Persistent ITP — This phase lasts between three and 12 months. Sometimes, a person in this phase may experience remission.
Chronic ITP — This phase lasts more than 12 months and often affects adults and sometimes teens. It’s still possible to go into remission in this phase, but treatment is often needed.
When classifying your condition, healthcare providers also consider your platelet count. Platelet counts help doctors estimate bleeding risk, but ITP is not usually classified as mild, moderate, or severe by platelet count alone. In current medical use, severe ITP generally means bleeding that requires treatment or another medical intervention.
A typical platelet count is about 150,000 to 450,000 platelets per microliter. Bleeding risk generally increases as platelet counts fall, especially at very low levels, but no single platelet count can predict exactly who will have serious bleeding.
However, many doctors will consider treatment when the platelet count drops below 25,000 to 30,000 platelets per microliter, as counts lower than this are associated with a higher risk of serious bleeding. Doctors also consider symptoms, age, medicines, other health conditions, and previous bleeding.
Platelet counts help doctors assess bleeding risk and decide whether treatment is needed. Remission is usually defined by maintaining an adequate platelet response without ongoing ITP treatment, rather than by reaching one specific platelet count.
Several factors can influence whether or not ITP goes into remission. For instance, your age, disease triggers, and treatments all play a role. Here are some factors that affect whether or not ITP goes into remission.
Younger children are more likely than adults to go into remission without treatment. In adults, remission rates vary depending on how remission is defined, how long people are followed, and whether they have received treatment.
The longer you have ITP, the less likely remission becomes. Some people in the newly diagnosed or persistent phases achieve remission with treatment. Reported rates vary depending on the treatment, the people studied, the length of follow-up, and how remission is defined.
First-line treatments such as corticosteroids and intravenous immunoglobulin can often raise platelet counts. However, the response may be temporary and does not always lead to lasting treatment-free remission.
When first-line treatments do not work well enough, second-line options may include thrombopoietin receptor agonists such as avatrombopag (Doptelet), eltrombopag (Promacta), or romiplostim (Nplate). Other treatments include fostamatinib (Tavalisse), rilzabrutinib (Wayrilz), rituximab, immunosuppressants, and splenectomy. Rilzabrutinib is approved for adults with persistent or chronic ITP who did not respond well enough to earlier treatment.
Many people have a rapid rise in platelet counts after splenectomy, but this early response does not guarantee lasting remission. One study found that about 60 percent of people who had a splenectomy did not need medical therapy again after surgery.
Doctors often delay splenectomy when possible because remission may still occur and the surgery carries lifelong risks, including serious infection and blood clots.
When ITP is linked to another autoimmune condition, the chance of remission and the response to treatment may vary depending on the specific condition and the individual. Plus, some autoimmune diseases like lupus frequently occur together with ITP. In some people, ITP may appear before lupus is diagnosed.
Even if you go into remission with the appropriate treatment, there is a chance that ITP can recur several times in your life. For this reason, it’s important to receive ongoing monitoring and follow-up care from a hematologist.
Between visits with your hematologist, you should also be on the lookout for concerning symptoms that warrant a visit with your healthcare provider. Recognizing signs and symptoms of bleeding early allows your healthcare team to check your platelet count and decide whether treatment is needed.
If treatment is needed, its main goals are to control bleeding and keep your platelet count at a safer level. Talk to your hematologist about the following symptoms:
Blood in your urine, stool, or vomit may be a sign of significant bleeding. Contact your healthcare team promptly for guidance.
If bleeding does not stop after you apply firm pressure, call 911 or your local emergency number. Uncontrolled bleeding is a medical emergency.
Additionally, if you’re feeling depressed, anxious, or don’t feel like your life is going well, tell your doctor. It’s just as important to address your mental and emotional health as it is your physical symptoms. Getting support is not a sign of weakness, but instead a sign of courage and can help improve your quality of life.
On myITPteam, people share their experiences with immune thrombocytopenia, get advice, and find support from others who understand.
If you have ITP, which phase are you in, and do your doctors feel it will go into remission with treatment? Let others know in the comments below.
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