Department of Rheumatology Portsmouth Hospitals NHS Trust Disease Modifying Anti-Rheumatic Medications (DMARDS) Monitoring Clinic Patient Information Leaflet Specialist Support This leaflet can be made available in another language, large print or another format. Please speak to the Ward Manager who can advise you.
You have been prescribed a new Disease Modifying Anti-Rheumatic Drug (also known as a DMARD) aimed at slowing down the disease process. DMARDS are used in combination with other medications such as pain killers (analgesia), anti-inflammatories (NSAIDS) and in some cases a short course of steroids. The most commonly used DMARDs are: Methotrexate Hydroxychloroquine Salazopyrin (Sulfasalazine) Leflunomide Azathioprine Cyclosporin Gold Mycophenolate Cyclophosphamide Painkillers and NSAIDS - will usually be prescribed by your own GP. You can obtain repeat prescriptions from your GP. Steroids - the Rheumatology Team will usually give you your first course. You will also be given a plan for reducing your steroids. Ongoing prescriptions for steroids can be obtained from your own GP. Never suddenly stop taking steroids and always follow the advice from your Health Care Professional. Remember these treatments are only used to control the symptoms of your arthritis or connective tissue disease. They are rarely sufficient to control the disease in the long term. It is important that we therefore introduce additional treatment with immunosuppressive drugs known as Disease Modifying Anti Rheumatic Drugs also known as DMARD s. 2
DMARDs are an important aspect for the management of your disease. These drugs suppress parts of the immune system thought to cause arthritis / connective tissue disease. Studies have shown that DMARDs are most useful when started at an early stage of the disease and when two are used together. In the DMARD Monitoring Clinic we aim to start treatment usually with one DMARD as soon as the diagnosis has been confirmed. Information about each individual DMARD is provided in a separate Arthritis Research UK or Department of Rheumatology leaflet. The aim of the DMARD Clinic is to give education on the medication and discuss monitoring procedures. There will also be checks to make sure it is safe to start the medication. This leaflet is designed to help you understand the steps of this process so that you are able to participate in your own care plan. If you do not understand the plan of care or feel that the plan is not being followed, you should contact the Patient Advice and Information Line on 02392 286935 or email Rheumatology at pho-tr.rheumatologypail@nhs.net so that your concerns and questions can be addressed. When you are starting a new DMARD: What happens next? During your clinic appointment: Your Consultant, Doctor or Clinical Nurse Specialist may decide to start or add a new DMARD. They will explain the reason why this is necessary. They will also provide you with the relevant leaflet for the medication. It may also be necessary to refer you to the DMARD clinic for further education and monitoring. It may be necessary to have a chest x ray for certain medications. 3
Before your first DMARD Clinic Appointment Please ensure that you have had a recent blood test within the past 3-5 days before your DMARD appointment. Ideally you should discuss with your own GP about having the Pneumovax and Flu Vaccination. Be prepared for your DMARD appointment by reading the Drug Information leaflet provided and come with a list of relevant questions. Please also ensure that you bring to your appointment a list of your current medication (prescribed, over the counter and herbal remedies). Please also inform us of any allergies. When you attend your first DMARD appointment: The Clinical Nurse Specialist will give you education on the drugs, including drug interactions and side effects. You will also be provided with written information. For many DMARD medications it is an important requirement to have regular blood tests. This will be discussed at your appointment and is for safety purposes. Previous blood tests will be assessed along with a chest x-ray if applicable. You will receive a prescription (to be collected from the hospital pharmacy) and blood forms for the necessary blood tests along with a future appointment. Your prescription will be for four weeks and it may be necessary to collect further prescriptions from the Rheumatology Department before your GP takes over prescribing the relevant medication. You will be registered on to the DAWN System (see below). You will also receive a Personalised Care Plan Folder for you to keep all your relevant information in about your DMARD s and treatment plans and useful information. 4
Following your DMARD Appointment The Clinical Nurse Specialist will write to your GP, outlining the treatment plan together with a copy of the relevant DMARD Protocol. Depending on other appointments you currently have, the Clinical Nurse Specialist will arrange a further follow up in eight to twelve weeks time. At this second appointment your treatment may be adjusted after discussions with the Consultant depending on your response to the medication. The prescribing and monitoring will then be taken over by your GP usually after you are on a stable dose of your medication. This is usually around two to three months after you start the medication. Shared Care - What does shared care mean? Shared Care is where your care is shared by your hospital Consultant and your own GP. It is more convenient for you to receive some of your care from your own GP. This means he or she will provide your prescriptions and provide you with ongoing support. Your Hospital Team (Consultant, Specialist Registrars and Clinical Nurse Specialists) will continue to see you in the Outpatient s Department to check your progress at regular intervals, based on your care management plan. They will also review your condition if there are any changes or other causes for concern. You will still receive the same high quality of care under the shared care agreement as given by your Consultant, but in a way that should be more convenient for you. This arrangement is fully supported by the hospital and your GP. Patient-held record - Personal Care Plan and monitoring record You will be given a Personal Care Plan Folder which you may find helpful. This will include information on medications including dosages, dates of tests and general information relevant to your conditions. You can show it to any Health Care Professional looking after your care. 5
Your role in shared care There are several things you can do to make the shared care arrangement successful you are part of the team. You must tell your hospital team if there is anything you do not understand about your treatment. You must share any concerns you have about the treatment. You must inform the team if you are taking any other medicines, for example herbal remedies, traditional Chinese medicines or products. Always ask your pharmacist before purchasing any medicines over the counter, including herbal remedies. Avoid buying medication for pain relief, coughs, colds and flu from a supermarket, garage or newsagent. Monitoring will involve blood tests and other tests. It s important you do not miss your blood tests. Remember if you do not attend blood test appointments, your treatment under the shared care arrangement may be stopped. Tell your Rheumatology Team how well the medication is working and whether you have developed any side-effects. Do not stop taking your DMARD s unless your Rheumatology team or GP tell you to. For example, you might be advised to stop taking your DMARD during some infections or if you have an operation, and then restart them once you have recovered. You must report any new, persistent or worsening symptoms to the Rheumatology Department or your GP. It is a good idea to have the pneumococcal vaccinations and the annual influenza vaccination. However, you should not have any live vaccines (including live travel vaccinations). Please discuss this with the Rheumatology Team. Blood Tests - You can have your blood tests taken at your own GP Practice or at the hospital (see Blood Tests Leaflet). 6
Why you need regular blood tests: Blood monitoring is extremely important on some DMARD medications. When you start treatment your Consultant will explain to you how the monitoring will be managed by the hospital and your GP. It is important that you do not miss your blood test. You must not take your medicine unless you are having any required regular blood tests. Blood tests inform your Consultant / GP how well the medicine is working and whether you are developing any side effects. Monitoring of results is essential to help your Consultant / GP decide if you can continue on treatment. When you first start treatment, blood tests will usually be more frequent and your Rheumatology Team may increase or decrease the number of tablets you take depending upon how well your treatment is controlling your condition. Once the dose is stable and the blood tests are satisfactory the frequency of your monitoring will be reduced. We monitor the blood tests through a system known as DAWN which is an electronic system that automatically monitors the blood tests of all patients on medication that are used to treat your type of arthritis / connective tissue disease. The DAWN system lets us know any changes in your blood test results allowing us to promptly act on these results. DAWN will also let us know if you are not having your blood tests. Remember it is your responsibility to have blood tests done on a regular basis. If you fail to have a blood test there is a process which is followed: Step 1 We will text you reminding you to have a blood test. 7
Step 2 - If you still have not had a blood test ten days after the text has been sent, we will write to you asking you to have a blood test. Step 3-30 days after the original text message reminding you about your blood test, if you still have not had the blood tests we will write to you and your GP suggesting that your treatment is stopped until you have had a blood test. Follow up Appointments You will continue to be seen in the Rheumatology Clinic once you have started on treatment. Your Rheumatologist will decide how often you need to be seen. Once your condition is stable your care will be shared between your GP and us. We will continue to monitor your blood results on DAWN but you do not need to return to clinic routinely unless your arthritis becomes more active. If there is a change in your condition, please contact the Rheumatology Department via the helpline number (02392 286935) or email pho-tr.rheumatologypail@nhs.net You will usually have a further follow up appointment with the Rheumatology Department around six months after starting your DMARD medication. This will depend on both your treatment and your condition. Any new DMARD medications added in will require similar steps. Questions you may have: What happens if I have forgotten to ask an important question or I have a concern? If at any time you have any concerns regarding your treatment you are advised to contact the Patient Advice and Information Line on 02392 286935 or email pho-tr.rheumatologypail@nhs.net 8
Remember this is not an emergency line and any urgent concerns should be dealt with by contacting your GP surgery in the first instance. Do the treatments have any side effects? DMARDs do have some side effects and anyone starting treatment is closely monitored with blood tests. The Clinical Nurse Specialist will discuss the potential side effects and how to manage these. Remember not all patients get side effects. What should I expect from these treatments? Although we cannot cure inflammatory arthritis / connective tissue disease, we aim to bring about remission. This means that you should be back to normal and be able to carry out day to day activities without any significant limitation whilst remaining on long term DMARD therapy. Remember DMARDs work slowly and it can take several months before you notice an improvement but we hope to get on top of your arthritis as soon as possible by starting treatment early and quickly increasing the dose. After about a year of remission, we may try to reduce DMARDs to the minimum amount needed to keep your arthritis under control. Most patients however, do need to be on some form of long-term DMARD therapy, even at low doses. What happens if the DMARD is not sufficient to control my arthritis/connective tissue disease. If this is the case we will discuss other DMARD or Biologic Therapies that are appropriate for your condition. Biologic Therapies can only be used in some conditions and the Government allows us to use these only if you meet the criteria. Your Rheumatology team will discuss these with you if the need arises. 9
Other Important Key Messages Don t miss a dose - if you do, don t take the dose if you are three or more days late, but do take your next dose on your usual day. Make a note of the date of the missed dose and tell the clinic when you next have a blood test. Don t take an extra dose - if you are unsure if you have taken your tablets; take your next dose when it is due. If necessary use a calendar and mark off each dose by a line through the date. Alcohol - Discuss with your Rheumatology team if you can drink alcohol. Known allergies - please ensure that your health care professionals are aware of any drug, food, latex, or animal allergies. Having an operation - Please notify the surgeon that you are taking a DMARD and seek their advice if there is a need to stop DMARDs prior to and after surgery. If you need further advice, please let the Department Rheumatology know through the patient advice and information line on 02392 286935 or pho-tr.rheumatologypail@nhs.net Admitted to hospital - If during your hospital stay you need further information or support the medical team can contact the Department of Rheumatology on call team via the hospital bleep system or you can contact us through the patient advice and information line on 02392286936 or pho-tr.rheumatologypail@nhs.net Over the counter medicines Don t take any other medication including over the counter medicines and herbal or Chinese remedies unless you check with your Rheumatology team, GP or Pharmacist first. 10
Do I need to stop my DMARDs if I have an infection? As the DMARDs are immunosuppressant s, some of them may need to be stopped temporarily if you develop a significant infection. The Clinical Nurse Specialist will advise you which DMARD needs to be stopped. If you have forgotten you can always contact the nurses via the patient advice and information or email pho-tr.rheumatologypail@nhs.net Flu and Pneumovax your GP or Practice Nurse should be offering the yearly flu vaccine and Pneumovax which are safe. Shingles vaccination please check with the Rheumatology department through the Patient Advice and Information Line before accepting a shingles vaccination. Other Travel Vaccinations your GP or nurse should not offer you any immunisation injections with live vaccines. Never share DMARDs never share your DMARD medication with another family member or friends. If you are sick/ unwell after a dose If you are sick or unwell within a few hours of taking your tablets, contact the Rheumatology department on the patient advice and information line on 02392 286935 or pho-tr.rheumatologypail@nhs.net (remember this is not an emergency number), if you feel that it is a medical emergency contact either your own GP or 111 or if an extreme emergency 999. If you take too many tablets - If you take too many tablets, miss your next dose and call the Rheumatology department or GP as soon as possible. Take care of your medicines - Store your tablets at room temperature and remember to keep all medicines in a safe place out of the reach of children and pets. 11
If your treatment ends and you have some tablets left over, return them to your pharmacist. Do not flush them down the toilet or throw them away. Travel home and abroad - if you are moving away from the local area and not staying under the care of Portsmouth Hospitals NHS Trust Department of Rheumatology, please notify us as soon as possible so we can arrange for all your Rheumatology medical and nursing notes to be transferred to your new hospital and GP. You should join your new GP practice as soon as you move and asked to be referred to the local Rheumatology Department. New symptoms - Speak to your Rheumatology Team if you develop any new symptoms after starting your medicine. If you experience any of the warning symptoms the Rheumatology Team has told you about, do not take your next dose of medicine until you have spoken to the Rheumatology team. I find it difficult to afford the prescription charges for my medicines and sometimes go without - Speak to your community pharmacist about buying a prescription prepayment certificate to help with the cost so that you don t miss your medicines. Who else can help me understand my arthritis/connective tissue disease? The Department of Rheumatology works closely with physiotherapists, hand therapists, podiatrist and orthopaedic surgeons. Together, these specialities make up the multidisciplinary team and your Rheumatology Consultant can direct you towards them if needed. How can I find out more about how to manage pain, fatigue and flares associated to my arthritis/connective tissue disease? Our department runs a variety of education meetings for patients which you are welcome to attend by contacting 02392 286935 or email rheumatology.conference@porthosp.nhs.uk 12
These Include:- No time for Pain a 3.5 hour pain management workshop. Tired of being tired - fatigue programme over 7 weeks. Flare Roller Coaster a 3.5 hour workshop. There are other programmes that we offer, you can find information about these on the Department of Rheumatology web page. 13
Additional Information There are a number of organisations that provide useful information about arthritis and its management. You can find information about these from: Arthritis Research UK www.arthritisresearchuk.org National Institute for Heath and Clinical Excellence www.nice.org.uk NHS Choices www.nhs.uk/pages/home.aspx 14
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Data Protection Legislation Privacy Notice Further information on how we look after your personal information can be found on the Trust Information Governance webpage at www.porthosp.nhs.uk - or alternatively, please speak to a member of staff. How to comment on your treatment We aim to provide the best possible service and if you have a question or a concern about your treatment then the Patient Advice and Liaison Service (PALS) are always happy to try to help you get answers you need. You can contact PALS on 0800 917 6039 or E-mail: PHT.pals@porthosp.nhs.uk who will contact the department concerned on your behalf. Follow us on Twitter @QAHospitalNews www.porthosp.nhs.uk Author: Rheumatology Produced: June 2018 Review: June 2020 Ref: RHEU/23 MPI ref: 18-1060 Portsmouth Hospitals NHS Trust 2018