This is the eighth part of our series about the condition based on our patient booklet “Fast Facts for Patients: Thrombotic Thrombocytopenic Purpura”. This blog post provides answers to 10 frequently asked questions about thrombotic thrombocytopenic purpura (TTP).
How do you get TTP?
People with congenital TTP (cTTP) are unable to make ADAMTS13 because of a genetic condition. Immune TTP (iTTP) occurs when the immune system mistakenly attacks ADAMTS13 with an antibody, stopping it from working. For most people, the reason why this happens is unknown. Low levels of ADAMTS13 result in small blood clots, and low red blood cell and platelet levels.
Can it be passed on and can I catch it from someone else?
No, iTTP cannot be passed on to or caught from someone else. People with cTTP have inherited it from their parents (if their parents are carriers). There is a chance that they might pass it on to their children.
Can I get it again?
Yes, it is possible to get iTTP again. The best way to prevent this is to monitor ADAMTS13 levels in the blood. If they are low, treatment with rituximab can be started to prevent a TTP relapse. In cTTP, ADAMTS13 levels are always low, so you will need regular plasma infusions to keep you well.
What treatment will I need?
If you have iTTP, you will need treatment during an acute TTP episode with plasma exchange and medication to suppress the immune system. You may also need outpatient treatment to suppress the immune system to prevent a relapse. If you have cTTP you will need treatment with infusions of plasma.
Will I need treatment for the rest of my life?
This depends on the type of TTP that you have. Patients with iTTP will need treatment for acute episodes or to prevent an acute episode. If you have cTTP, you are likely to need long-term treatment with infusions of plasma.
What are the side effects of treatment?
Treatment for TTP is generally very safe, but there are potential side effects, depending on the treatment given.
Can I exercise with TTP?
Yes, it is safe to exercise, but it is normal to feel tired early on after an acute TTP episode. Regular exercise is good for you, but do not push yourself too hard.
When can I go back to work?
Your medical team will discuss this with you; it will depend on the TTP treatment you are receiving and, most importantly, how you are feeling and the type of job you have. This may mean you cannot return to work for at least a few weeks after an acute iTTP episode, and sometimes it can take longer. We recommend a gradual, phased return to work and, where possible, you should discuss this with your employer and/or your occupational health department.
Can I take or eat anything to stop another TTP episode?
What you eat will not cause or prevent a TTP episode, but it is important that you eat a healthy balanced diet for your general health.
I want to go on holiday, will TTP affect my travel insurance?
Having TTP can mean your travel insurance premium will be higher; however, some insurance companies generally offer insurance for patients with TTP, and it is important that you take insurance out before you travel.
Please check out the other posts of our series here:
- What Is Thrombotic Thrombocytopenic Purpura (TTP)?
- Types and Symptoms of Thrombotic Thrombocytopenic Purpura (TTP)
- How Is Thrombotic Thrombocytopenic Purpura (TTP) Treated?
- Immune Thrombotic Thrombocytopenic Purpura (iTTP) Treatment: Plasma Exchange
- Immune Thrombotic Thrombocytopenic Purpura (iTTP) Treatment: Medications Suppressing the Immune System
- Medications for Immune Thrombotic Thrombocytopenic Purpura (iTTP) and the Role of Clinical Trials
- Thrombotic Thrombocytopenic Purpura (TTP): The UK TTP Registry
Information based on Fast Facts for Patients: Thrombotic Thrombocytopenic Purpura (Karger, 2022).