Disease Modifying Anti Rheumatic Drugs (DMARDS) and Blood Test Monitoring Explained

Disease Modifying Anti Rheumatic Drugs (DMARDS) and Blood Test Monitoring Explained

DMARDS:

You have been prescribed a new DMARD drug. DMARDs are an important part of your disease management used to slow down the disease process by dampening down the activity of the immune system.

They can be used alone or in combination and can be taken alongside other drugs such as painkillers, anti-inflammatories and steroids.

The most commonly used DMARDS are:

• Methotrexate (tablets or injection)
• Salazapyrin EN/Sulfasalazine
• Hydroxychloroquine (taken alone does not require blood test monitoring)
• Leflunomide
• Azathioprine
• Mycophenolate Mofetil
• Ciclosporin

These medications will be started by a member of the rheumatology team who will explain the treatment to you fully and provide you with your initial prescription. They will also provide you with a yellow Patient Passport booklet to ensure you are monitored safely whilst taking your treatment.

BLOOD TESTS:

For most DMARD medications it is important to have regular blood tests. Blood tests can inform us how well your treatment is working but more importantly whether you are experiencing any adverse effects from your treatment.

The frequency of your blood test monitoring will be documented in your yellow Patient Passport booklet. You can have your blood test taken either at your GP surgery or your local hospital. You will need to book the blood test in advance at wherever you choose to have it done. It is your responsibility to book your blood test at the right time.

The results of your blood tests for the first 6 weeks of treatment will be checked by your rheumatology team. They will be checking that the DMARD has not affected your blood count, liver function and kidney function. After the first 6 weeks, if everything is satisfactory your blood test monitoring will be taken over by your GP. This is called Shared Care.

SHARED CARE:

This is when your care is shared by your hospital rheumatology department and your GP. It is often more convenient to receive care from your GP e.g. repeat prescriptions, blood tests, support.

You will be followed up regularly in the rheumatology outpatient department for disease assessment and progress. It is here that any adjustments to your treatment or management will be made and then your GP will be informed of those changes and their role in the shared care plan.

The GP does not need to see your Patient Passport as information about your treatment will be sent to them in a letter.

You are a key member of the shared care plan, and it is important that you have a clear understanding of your responsibilities in relation to the monitoring of your disease modifying medication. These are clearly documented in your handheld Patient Passport (Yellow Book) as detailed below:

1. Report to specialist or GP if you do not have a clear understanding or have any concerns in relation to treatment
2. Ensure safe storage and handling of medicine
3. Request repeat prescriptions from GP at least one week in advance of medication running out
4. Book and attend for blood tests at GP practice at the timings set out in the Patient Passport as per advice from a doctor/specialist nurse
5. Utilise the Patient Passport as a request for the necessary blood tests in primary care
6. Ensure the GP and specialist are aware of any over-the-counter medicines you may be taking
7. Ensure the Patient Passport is brought to each appointment with your GP or specialist
8. Report any adverse effects to the GP or specialist team

Do not leave your Patient Passport with your GP, phlebotomist, practice nurse or at the rheumatology department.

There is a space at the back of the Patient Passport where blood results can be recorded. If you live in Worcestershire, the results will be able to be accessed at the rheumatology department. If you live outside of Worcestershire, it would be useful to have your results filled in or a copy of them to be reviewed at your next clinic appointment.

If your GP has any concerns about your blood tests, they have access to a document called the ‘Shared Care Guidelines’ which provides guidance on how to manage abnormal results or they have a dedicated e-mail address where they can ask the rheumatology team directly for advice.

If you have any concerns about your blood test monitoring or results of blood tests you can call the rheumatology advice line to discuss on 01905 760461.

If your symptoms or condition worsens, or if you are concerned about anything, please call your GP, 111, or 999.

Patient Experience

We know that being admitted to hospital can be a difficult and unsettling time for you and your loved ones. If you have any questions or concerns, please do speak with a member of staff on the ward or in the relevant department who will do their best to answer your questions and reassure you. 

Feedback

Feedback is really important and useful to us – it can tell us where we are working well and where improvements can be made. There are lots of ways you can share your experience with us including completing our Friends and Family Test – cards are available and can be posted on all wards, departments and clinics at our hospitals. We value your comments and feedback and thank you for taking the time to share this with us.

Patient Advice and Liaison Service (PALS)

If you have any concerns or questions about your care, we advise you to talk with the nurse in charge or the department manager in the first instance as they are best placed to answer any questions or resolve concerns quickly. If the relevant member of staff is unable to help resolve your concern, you can contact the PALS Team. We offer informal help, advice or support about any aspect of hospital services & experiences.

Our PALS team will liaise with the various departments in our hospitals on your behalf, if you feel unable to do so, to resolve your problems and where appropriate refer to outside help.

If you are still unhappy you can contact the Complaints Department, who can investigate your concerns. You can make a complaint orally, electronically or in writing and we can advise and guide you through the complaints procedure.

How to contact PALS:

Telephone Patient Services: 0300 123 1732 or via email at: wah-tr.PALS@nhs.net

Opening times:

The PALS telephone lines are open Monday to Friday from 8.30am to 4.00pm. Please be aware that you may need to leave a voicemail message, but we aim to return your call within one working day.

If you are unable to understand this leaflet, please communicate with a member of staff.

Version 2