What to do now you have been started on a Disease Modifying Anti-Rheumatic Drug (DMARD)
What is a DMARD?
A Disease-Modifying Anti-Rheumatic Drug (DMARD) is a medicine that can stop or slow down the damage caused by the progression of inflammatory diseases, for example, rheumatoid arthritis (RA) and psoriatic arthritis (PsA). DMARDs are not pain relief – they aim to slow down or stop disease- related tissue damage by reducing inflammation, but can also reduce pain, swelling, stiffness, fatigue and other symptoms.
Why have I been put on this drug?
DMARDs can help reduce inflammation, relieve pain, prevent and slow down tissue damage, reduce disability, and enable you to be as active as you can for as long as possible. Although there's no cure for conditions such as RA and PsA, early treatment can reduce the risk of permanent joint damage and limit the impact of the condition.
What is the DMARD service?
A structured plan to monitor the early stages of DMARD treatment, through clinic appointments and blood tests.
Medicines monitored in the service include:
- Methotrexate
- Sulfasalazine
- Mycophenolate
- Leflunomide
- Azathioprine
- Ciclosporin
- Penicilliamine
- Sodium Aurothiomalate
What blood tests are taken and why?
- Liver profile – measures liver function.
- Renal profile – measures kidney function.
- Full Blood Count (FBC) – measures blood cells such as white blood cells which fight infection.
- Erythrocyte sedimentation rate (ESR) – measures inflammation associated with auto-immune conditions.
- C-reactive protein (CRP) – measures general inflammation.
Why do I need to get regular blood tests?
DMARDs are very effective drugs for treating many inflammatory diseases. DMARDs work by dampening down the patient’s immune system but as a result they can also weaken the body’s ability to fight infections. In addition, DMARDs can sometimes affect liver and kidney function, especially in those with history of impairment. Finally, monitoring inflammation is a way to measure the effectiveness of treatment.
Where can I get my bloods taken and when?
- A patient can get their blood taken at the following places:
- Furness General Hospital Pathology Lab
- Royal Lancaster Infirmary Main Outpatients
- Westmorland General Hospital Main Outpatients and or Dunmail unit
- GP surgery
- Phlebotomy outreach clinics (speak to the rheumatology nurses for more information about locations, availability and booking an appointment)
Blood tests will be arranged with you at your rheumatology nurse appointments and will be requested electronically on our computer system. It is your responsibility to arrange and attend for regular blood tests. DMARD treatments require a level of commitment to ensure you are being safely monitored. If attendance for blood tests is, or could be a problem, please discuss this with your rheumatology nurse at the earliest opportunity (contact details are provided later in the leaflet).
If a commitment to regular blood tests cannot be made, treatment cannot be started or continue. See below the agreed patient journey for blood monitoring for patients within secondary care (hospital) until deemed stable:
Week 0 – you begin on DMARD (baseline bloods must have been taken)
Week two, four and six – blood tests must be done every two weeks until stable for six weeks.
Week ten, fourteen, and eighteen – blood tests every month until stable for three months.
Week eighteen – you will be referred to primary care (GP) as long as your bloods are stable.
If you have a dose increase mid pathway you will have three additional two weekly blood tests. If your bloods are stable you will then revert back to monthly monitoring. Due to unstable bloods or other clinical reasons you may need to attend for more blood tests, more frequently, and for this reason you may need to stay in the service for longer.
However, you will be discharged as early as possible once clinically stable. See the table below for more information.
| Blood test number | Week | |
| 0 | Week 0 | Baseline bloods are taken before treatment can begin |
| 1 | Week 2 | Fortnightly blood tests |
| 2 | Week 4 | Fortnightly blood tests |
| 3 | Week 6 | Fortnightly blood tests |
| 4 | Week 10 | Monthly blood tests |
| 5 | Week 14 | Monthly blood tests |
| 6 | Week 18 | Monthly blood tests |
| 7 onwards | Week 30 onwards | Every three months blood tests via GP |
| Additional blood tests | Week XX | Dose increase or formulation change |
How are my bloods requested?
Bloods are now requested online and do not require a paper blood form to be taken at the hospital. If you need to attend for bloods at your local GP surgery instead, you must arrange an appointment and inform them of which tests are needed.
How do I find out my blood results?
Results of blood tests are not routinely provided. If your blood results are a cause for concern you will be contacted by a member of the rheumatology team; otherwise you should continue to take your treatment as normal.
What happens if my blood results aren’t as good as they should be?
A member of the Rheumatology team, usually a nurse or pharmacist will call to inform you of your results and what actions need to be taken.
What do I do if I cannot attend for bloods?
If you cannot attend for bloods on the agreed date then you have up to seven days before or after the agreed date to attend. Wherever possible you should attend as close to the agreed date as you can. If you cannot attend for bloods within seven days, please contact the rheumatology secretaries to inform us: •
- Lancaster secretaries: 01524512419
- Kendal secretaries: 01539715080
- Barrow secretaries: 01229403799 or 01229403786
However, if a commitment to regular and timely blood tests cannot be made, treatment cannot continue.
What do I do if I get a ‘Did Not Attend’ (DNA) for bloods letter?
If you do not attend for a blood test within a week of the agreed time a DNA blood letter will be sent to your address advising you that no more prescriptions will be issued until your bloods are taken and you have made contact with Rheumatology on the designated number.
Do I need any other tests besides the ones stated?
Yes, some drugs such as leflunomide require additional monitoring of the patient’s weight and blood pressure. Other investigations may also be requested if deemed necessary for your individual needs. You will be informed by your rheumatology nurse of any additional tests needed.
How often will I see a rheumatology nurse?
You will have an appointment in person or over the phone at week zero with the rheumatology nurses, to learn about your DMARD therapy before starting. You will then be seen approximately every six weeks at week six, week twelve, and week eighteen. At week eighteen if you are safe and stable, you will be referred to your GP, who will then provide continued prescriptions. Future blood tests will then need to be arranged through the GP surgery. You will still continue to see the rheumatology nurse or consultant, but less frequently.
If you have unstable bloods, active disease or call the advice line, you may have more frequent nurse and or consultant reviews. You may therefore need to stay in the service for longer than eighteen weeks, but you will be discharged as early as possible once clinically stable.
What do I do if I think I am overdue for a rheumatology nurse review?
Contact the rheumatology nurse advice line on 01539 716998 to arrange an appointment.
What do I do if I cannot attend my nurse appointment?
Contact CPCC (the hospital contact centre) on 01539 795300 to request an alternative appointment.
What do I do if I get a ‘Did Not Attend’ (DNA) for a nurse appointment letter?
If you did not attend a rheumatology nurse appointment a DNA letter would be sent to your address advising you to contact the Rheumatology Clinic on a designated number to arrange new review date. However, you may be refused further prescriptions until you are reviewed by a rheumatology nurse.
How long will my prescription last?
Prescriptions written in the DMARD service are usually for six to eight weeks. However, if you needed a supply to bridge the gap until your next nurse appointment, for example two weeks, then a smaller supply will be provided. This is to reduce potential waste and to ensure the DMARD is still appropriate for you.
Where do I collect my prescription?
Prescriptions are sent to Lloyds hospital pharmacy at either Royal Lancaster Infirmary, Westmorland General Hospital, or Furness General Hospital based on the nearest hospital to where you live and go for appointments. These are hospital-only prescriptions and cannot be taken to a normal community pharmacy.
Will I have to pay for my prescription?
The usual rules for NHS prescriptions apply for hospital outpatient prescriptions. If you usually pay for your medication then there will be a charge for the DMARD medication. Further information can be found on the NHS website.
What do I do if I am running out of medicine?
If you have enough medication until your next appointment please wait. If you do not have enough medication to last until your next appointment, please contact the rheumatology nurse advice line on 01539 716998 to request a prescription. However, if it has been a while since your last appointment then a nurse review may also be required.
The advice line is available Monday to Friday 9am - 2.30pm. There is no cover on bank holidays or weekends. We aim to answer any queries within two working days; however this is an advice line and not an emergency service.
How long will it take to see benefit from the medicine?
It can take up to twelve weeks to gain any benefit from taking your DMARD.
What do I do if my condition is getting worse or I experience side effects or get an infection?
Contact the rheumatology nurse advice line on 01539 716998. If you develop an infection or another health condition contact your GP for treatment.
The advice line is available Monday to Friday 9am - 2.30pm. There is no cover on bank holidays or weekends. We aim to answer any queries within two working days; however this is an advice line and not an emergency service.
What do I do if I’m started on another drug after starting my DMARD?
Speak to your community pharmacist/chemist or GP and mention it at the next appointment. When it is time to be discharged how will this happen? When you are considered to be safe and stable on your DMARD treatment you will be informed and your care will be transferred to the GP. This is usually eighteen weeks after you have started DMARD treatment. All blood tests and prescriptions will then be done by your GP.