Another TTP episode may happen1
While you can fully recover from TTP episodes, they may continue to happen during your lifetime. Learning what to watch out for can help you act quickly at the first sign of symptoms.
TTP recurrence1
TTP can be a lifelong condition. Even though it can be managed, it is normal to have at least one more TTP episode throughout your life, though some people may have many or only have one. Another episode of TTP is called “recurrence.” Depending on when a recurrence happens, it can also be called an "exacerbation" or a "relapse." You may hear your doctor use these terms interchangeably. Knowing the symptoms of TTP can help you recognize them so you can call your doctor right away when they happen. The most important thing to do when having another TTP episode is to get treated right away.
“If I could share one thought with someone who’d been diagnosed with TTP, it would be to look after—listen to your body, and if you feel unwell, go and get a blood test… Just keep an eye on yourself and don’t delay if you do feel you’re relapsing.”
—Jo, living with TTP
Understanding the TTP journey2-7
day
5
≤30
>30
day
0
TTP episode
5
days
Refractory TTP
- This is when you don’t see improvement soon after starting treatment
- It happens when the number of platelets in your blood doesn’t improve within 5 days of starting your treatment
- This is not common (it happens in about 17% of people), but it is possible
≤30
days
TTP exacerbation
- This is an additional episode of TTP that happens less than 30 days after you finish your TTP treatment because the immune system is continuing to attack ADAMTS13
- If you are given only some of the available treatments for TTP or you don’t finish your treatments, this may happen to you. Exacerbations can also occur for other reasons than these
>30
days
TTP relapse
- This is an additional episode of TTP that happens more than 30 days after you finish your TTP treatment
-
It is very common and is a lifelong risk for anyone with TTP
- Studies show up to 84% of people can have a recurrence
TTP episode
Refractory TTP
- This is when you don’t see improvement soon after starting treatment
- It happens when the number of platelets in your blood doesn’t improve within 5 days of starting your treatment
- This is not common (it happens in about 17% of people), but it is possible
TTP exacerbation
- This is an additional episode of TTP that happens less than 30 days after you finish your TTP treatment because the immune system is continuing to attack ADAMTS13
- If you are given only some of the available treatments for TTP or you don’t finish your treatments, this may happen to you. Exacerbations can also occur for other reasons than these
TTP relapse
- This is an additional episode of TTP that happens more than 30 days after you finish your TTP treatment
-
It is very common and is a lifelong risk for anyone with TTP
- Studies show up to 84% of people can have a recurrence
If you experience any of these TTP recurrences, be sure to talk to your care team about your treatment plan to make sure you’re getting all the available treatments.
Ongoing monitoring can lower your risk of serious health problems1,8,9
Some people may never have another TTP episode in their lives, while others may have several.1 It is currently not clear why some people develop recurrences while others don’t. Any episode of TTP needs to be treated as early as possible. The earlier you can get treated, the lower the risk of serious health problems.
Ongoing monitoring involves 3 things:
Having regular check-ins with your doctor—even if you feel fine!—so they can monitor things like your bloodwork
Monitoring ADAMTS13 levels can help prevent recurrence.
During a TTP episode, the amount of ADAMTS13 in the blood is much lower than normal. A decrease in ADAMTS13 can be a sign of another TTP event.8
Your doctor may monitor your ADAMTS13 levels as a way of deciding whether you need treatment to help prevent a recurrence. If you’ve never had an ADAMTS13 check after leaving the hospital, be sure to ask if you should have this test as part of your ongoing monitoring.
“After discharge, I was actually followed on a weekly basis and I had the bloods tested every week.”
—Saida, living with TTP
Knowing the symptoms of TTP and recognizing them when they happen to you8,9
Symptoms of TTP can include:
Knowing the triggers of TTP
Potential triggers of TTP can include:
Personal health conditions, including cancer, HIV, and lupus
Certain treatments and/or medicines
Infections
Pregnancy
Any symptom of TTP should be considered a medical emergency.
You should contact your doctor as soon as you notice symptoms so you can receive treatment as soon as possible.
Are you or a loved one in the hospital with TTP?
TTP is rare, but you’re not alone. Learn from others who have been there.
References: 1. Falter T, Alber KJ, Scharrer I. Long term outcome and sequelae in patients after acute thrombotic thrombocytopenic purpura episodes. Hämostaseologie. 2013;33(2):113-120. doi:10.5482/HAMO-12-11-0019 2. Scully M, Cataland SR, Peyvandi F, et al. N Engl J Med. 2019;380(4):335-346. doi:10.1056/NEJMoa1806311 3. Benhamou Y, Boelle P-Y, Baudin B, et al. Cardiac troponin-I on diagnosis predicts early death and refractoriness in acquired thrombotic thrombocytopenic purpura. Experience of the French Thrombotic Microangiopathies Reference Center. J Thromb Haemost. 2015;13(2):293-302. doi:10.1111/jth.12790 4. Chemnitz JM, Uener J, Hallek M, Scheid C. Long-term follow-up of idiopathic thrombotic thrombocytopenic purpura treated with rituximab. Ann Hematol. 2010;89(10):1029-1033. doi:10.1007/s00277-010-0968-3 5. Arnold DM, Patriquin CJ, Nazy I. Thrombotic microangiopathies: a general approach to diagnosis and management. CMAJ. 2017;189(4):E153-E159. doi:10.1503/cmaj.160142 6. Cuker A, Cataland SR, Coppo P, et al. Redefining outcomes in immune TTP: an international working group consensus report. Blood. 2021;137(14):1855-1861. doi:10.1182/blood.2020009150 7. Thejeel B, Garg AX, Clark WF, et al. Long-term outcomes of thrombotic microangiopathy treated with plasma exchange: a systematic review. Am J Hematol. 2016;91(6):623-630. doi:10.1002/ajh.24339 8. Scully M, Hunt BJ, Benjamin S, et al; British Committee for Standards in Haematology. Guidelines on the diagnosis and management of thrombotic thrombocytopenic purpura and other thrombotic microangiopathies. Br J Haematol. 2012;158(3):323-335. doi:10.1111/j.1365-2141.2012.09167.x 9. Joly BS, Coppo P, Veyradier A. Thrombotic thrombocytopenic purpura. Blood. 2017;129(21):2836-2846. doi:10.1182/blood-2016-10-709857