This is the seventh part of our series about the condition based on our patient booklet “Fast Facts for Patients: Thrombotic Thrombocytopenic Purpura”. This article offers information about the UK TTP Registry, psychological support and neuropsychological testing, and when going home after TTP treatment.
The UK TTP registry is important for improving our understanding of TTP. The UK TTP registry is used to collect information and blood test results (from when you are admitted to hospital until the episode has resolved) to help improve TTP care and treatment. Your TTP team will be able to discuss this with you at your appointments. You may also be asked to take part in other studies.
Psychological Support and Neuropsychological Testing
TTP can have important effects on both mood and brain function (cognition). Problems such as low mood or anxiety, or issues with memory and concentration, are fairly common after a TTP episode, and can present in many ways. They may happen early after diagnosis or several weeks later, and can be temporary or, occasionally, last longer.
Whenever they emerge, if you are experiencing any of these symptoms, it is important that you discuss them with your TTP team.
Support is available and your team can organize it for you. Sometimes a referral is made for assessment by a clinical psychologist/counsellor if needed. The psychology team is experienced in dealing with patients with TTP so has a good understanding of the impact it can have. Your TTP team can also refer you to specialists who can test your memory/cognitive function (neuropsychological testing) and help you improve it.
Going Home after TTP Treatment
You will be able to go home when you are feeling better, your platelet count is within normal limits and plasma exchanges have stopped. Your general practitioner (GP) will be informed of your condition and the treatments that you have received, and we will establish links with your local hospital if you live some distance from University College London Hospitals (UCLH).
- When you do get home, you will need to relax. You will feel very tired because you will have likely been less mobile than normal for a while and your body will still be recovering from the acute TTP episode. In addition, you will probably still be anemic (low red blood cell count/hemoglobin), which can add to feeling fatigued. Do not try to go straight back into your old routine, and accept offers of help from friends and family.
- You will need to consider a phased return to work or working from home where possible. We can provide certificates/letters for your employer.
Medications after Discharge
If you have started caplacizumab treatment, you will continue this at home for a few weeks and will need to self-inject (or have someone else administer it for you). Your nurse specialist will teach you how to do this. You will probably also go home with folic acid and a medication to protect your stomach.
Having the caplacizumab injection every day is very important; it is stopping the little blood clots from forming and preventing TTP from relapsing.
What to Do If You Feel Unwell
When you first go home you should expect to feel tired, but there are some things to look out for:
- headaches not relieved by paracetamol
- blurred vision, dizziness or confusion
- easy bruising without obvious cause
- dark urine
- feeling unwell and worried.
It is important that you call your TTP nurse specialist (or emergency hematology contact number, if outside normal working hours) if you have any of the symptoms above. They will arrange for you to have a blood test.
In most cases, the blood counts will be steady, but occasionally a patient may have an early relapse and will need to be readmitted for further treatment. If you do not live near to UCLH we may be able to arrange for you to have a blood test locally.
You can expect to be seen weekly as an outpatient for at least 4 weeks for further treatment/clinic appointments with your Consultant Hematologist or Senior Registrar and a TTP nurse specialist. They will be able to monitor your recovery and give you further treatment where needed, or refer you to other services that may be helpful. As your ADAMTS13 level returns to normal/ your baseline, these visits will increase from weekly to monthly, and then to every 3–6 months. However, this will depend on how clinically well you are and your ADAMTS13 level. For example, if your ADAMTS13 level is repeatedly normal, you may have fewer initial visits. Similarly, if you are showing signs of needing elective rituximab treatment, extra visits may be needed.
If you have been diagnosed with cTTP you will need to attend clinic regularly for your plasma infusion treatments.
Clinic takes place on Fridays on the 4th floor of the Macmillan Cancer Centre, Huntley Street. You will need to go to the lower ground floor first to have a blood test, then come upstairs to your clinic appointment. You will be given some blood sample bottles to bring with you to clinic; this is to test your ADAMTS13 level. You will be told some of your results straight away, such as your hemoglobin and platelet levels, but you will get the rest another day. The doctor who sees you will check your results and send you a letter to let you know what they are. You will be contacted if there is any need to see you again quickly.
It is important that you attend all your clinic visits so that we can see how you are responding to treatment. They are also the best way for you to access services that you need.
TTP in the Long Term
It is important to remember that TTP (both iTTP and cTTP) will need lifelong follow-up in the clinic. This will allow appropriate monitoring and any need for treatment to be identified. If you have iTTP, treatment may be needed intermittently to prevent a relapse; your ADAMTS13 level will be checked at regular intervals to see if this is needed. Patients with cTTP often need regular plasma infusion treatments to control their symptoms.
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): 10 Frequently Asked Questions
Information based on Fast Facts for Patients: Thrombotic Thrombocytopenic Purpura (Karger, 2022).