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- What can you expect from the PIU?
- Who shall I contact about my concerns regarding my MS (Multiple Sclerosis)?
- Who can I contact about my appointments?
- Do I have to attend every MRI scan that has been booked for me?
- How long will my appointment take?
- Will I be able to have the same appointment every time?
- When can I have the Covid or flu vaccine?
- Can I bring a family member or friend for my infusion?
What can you expect from the PIU?
- A friendly service while having your infusion or injection.
- Specific appointment slots booked in advanced.
Who shall I contact about my concerns regarding my MS (Multiple Sclerosis)?
- Before your infusion we will ask you to fill in a questionnaire, and if you have any questions, we will ask the MS team or the neurology medical team to help you.
- In between infusions contact your MS team on 01273 696955, extension 65421 or 65757, your community nurse or your consultant’s secretary if you need any help.
- If you need immediate help during the out of hours period (after 4 pm every day), please call emergency services.
Who can I contact about my appointments?
A member of the PIU team on 01273 696955, extension 67117, to cancel or amend Tysabri appointments.
Do I have to attend every MRI scan that has been booked for me?
- Yes. It is very important that you attend your MRI scans when having Tysabri treatment. If JCV positive, your MRI scans will be 3 monthly or 6 monthly depending on your titre (a special blood test that checks if you are immune to JCV). You will do the MRI scan every year if you are JCV negative.
- Please call the MRI department if you cannot attend and rebook your appointment.
- The MRI department number is 01273 696955, extension 63923, to cancel your appointment. Use extension 69019 if you wish to reschedule your appointment.
How long will my appointment take?
- At the beginning of your appointment, we will ask you to fill in a questionnaire. If you have any questions you can ask the team.
- You then will have your blood pressure measured and a needle will be inserted into your arm. If we need to take some blood for testing we will use the same needle. Please note that we need to perform a blood test every three months.
- The blood test for JC virus is carried out every 6 months.
- A member of the nursing team will take your blood pressure and carry out a urine dip test if needed.
- If you and the team are happy, the Tysabri will then be infused over a period of 1 hour. You then need to stay for 1 hour after your infusion whilst the ‘flush’ runs through. This can be discussed if you have been receiving the Tysabri for more than 6 months.
- We will then take another blood pressure recording; remove the needle and you can be discharged.
- You can expect to be on the unit for 1.5 to 2.5 hours approximately. If you are having subcutaneous injections, instead of infusions, your stay will be no longer than hour.
Will I be able to have the same appointment every time?
- We will try our best to accommodate your requests. However, due to other needs and demands on the service this may not always be possible.
- Please try not to arrive any more than 5 minutes before your allocated time.
- If you are running late on the day of your appointment, try to let us know by giving us a call on the extension 67117. Once you do arrive, we will aim to provide you with your infusion as soon as possible.
When can I have the Covid or flu vaccine?
You can have a Covid vaccination 2 weeks before and 2 weeks after your Tysabri infusion or injection.
You can have a Flu vaccination one week before or after your infusion or injection.
For any other vaccines you may need, please contact your MS team.
Can I bring a family member or friend for my infusion?
Please check with the staff if your family member can stay throughout, as we have limited chairs available per appointments.
If you are not feeling well or have been prescribed antibiotics please notify the PIU team before attending your appointment. We may cancel your appointment for up to 5 days.
Note: for a ‘my appointments’ table to fill in, please see the PDF version of this leaflet
This information is intended for patients receiving care at Brighton and Hove, Royal Sussex County Hospital.