Patient Information

General Rheumatology advice is available below:

Joint assessment

One of the health professionals may ask you to assess your own joints before or after your appointment. There is a short video here https://www.rheumatology.org.uk/news/details/video-patients-self-assess-swollen-tender-joints to help you decide if you can learn how to do this.

Contact details:
These numbers are for existing Rheumatology patients only and should not be used for queries about appointments, for this please refer to your last appointment letter or telephone 01752 439890.

Rheumatology Nurses Advice Line Number: 01752 439688. This is a voicemail service.

Please leave your name, your date of birth or hospital number, a contact number where we can reach you during office hours and a short message with your clinical query, or email plh-tr.rheumatologypatientsadvice@nhs.net. A member of the clinical team will return your call within one or two working days. 

Secretary contact numbers below. If you need to leave a message, please state your name, hospital or NHS number and your contact number with a brief reason for your call. 

Alex Bond (Team Leader, Secretaries & Secretary to Dr Savanovic-Abel): 01752 431551
Katie Morris (Secretary to Dr Perry): 01752 439236
Sharon Tozer (Secretary to Dr King): 01752 430068
Nikki Smith (Secretary to Dr Moore):  01752 430071
Alexandria Lewin (Secretary to Dr Dojcinovska): 01752 431529
Janet Wood (Secretary to Registrar & Clinical Fellow):  01752 430051
Fran Holman (Secretary to the Nursing Team): 01752 432123

For GP admin queries (not appointments) please email plh-tr.rheumatologyadmin@nhs.net.

You can also follow us on Twitter @RheumUHPT

COVID-19 Information

To all our patients, please read the letter and flowcharts below to help answer your queries regarding your drug regime during COVID-19. 

Rheum letter to all patients.docx 501KB

Covid-19 Drug regime flow charts for Rheumatology.pdf 55KB

BSR Letter to patients.pdf 133KB

If you fall into the 'shielding' category, ie highest risk/most vulnerable could you please contact rheumatology by emailing the nurse advice inbox – plh-tr.rheumatologypatientsadvice@nhs.net or by leaving a message on the nurse advice line 01752 439688. This will help us coordinate with the GP service regarding your ongoing care.

Courtesy of the Rheumatology Department at Royal Wolverhampton NHS Trust below is a presentation providing advice to patients during COVID-19.

Royal Wolverhampton NHS Trust Coronavirus / COVID-19 Advice for Rheumatology patients

How can you get assistance with foods and medicines if you are shielding? 

Ask family, friends and neighbours to support you and use online services. If this is not possible, then the public sector, business, charities and the general public are gearing up to help those advised to stay at home. Please discuss your daily needs during this period of staying at home with carers, family, friends, neighbours or local community groups to see how they can support you. Please visit gov.uk/coronavirus-extremely-vulnerable to register for the support that you need. This includes help with food, shopping deliveries and additional care you might need. 

Further advice is available from the following links:

 

Frequently Asked Questions about your condition

Concerns about your condition/treatment

What is a flare?

Inflammatory arthritis activity often varies and there will be times when your arthritis will be relatively quiet and manageable.

At other times a 'flare' of arthritis may result in some of the following symptoms:

  • increase of swelling and / or stiffness in the joints
  • worsening pain in the joints
  • increased tiredness
  • general 'unwell' feeling
  • night sweats / fever / weight loss.

A flare is unpredictable and may start suddenly. It can last for hours, days or weeks. Some flare triggers include infection, such as a chest or urinary infection, or physical or mental stress. In some cases there is no identifiable trigger. If you have an infection, it is best to consult your GP, as you may require treatment.

  • What should I do if my arthritis is flaring?
    • Use maximum doses allowed of pain relief, such as paracetamol and anti-inflammatory drugs if prescribed: ask your GP for something stronger if necessary.
    • Rest the affected joints on a pillow or footstool and apply cold packs or ice if helpful. If you have no ice, a bag of frozen peas wrapped in a towel would do just as well, but be careful to avoid direct contact on the skin as this can result in burns.
    • Some people find hot packs more soothing but if your joints are already warm and swollen, cooling them down may be preferable.
    • If there is no improvement within 5-7 days contact us via the advice line on 01752 439688 or advice email plh-tr.rheumatologypatientsadvice@nhs.net
  • My knee / shoulder / elbow is swollen, and I think it may need aspirating and injecting, what should I do?
    • Ice packs may help to reduce the swelling.
    • Aspiration and injection of the joint(s) with steroid is sometimes helpful; however, if more than one joint is affected, your medication may need adjusting. Some GPs are able to perform joint aspiration and injection, however, if your own GP cannot do this, please contact us via the advice line on 01752 439688 or email plh-tr.rheumatologypatientsadvice@nhs.net
    • If you need frequent joint injections or  repeated injections in the same joint please discuss with us as we may need to adjust your treatment long-term
  • I have injured myself; what should I do?
    • If you have suffered an injury please see your GP. If your GP has ongoing concerns they may refer you for further treatment.
  • Will smoking affect my condition?
    • Smokers are at increased risk of developing rheumatoid arthritis and patients with rheumatoid arthritis who smoke have worse arthritis than those who don't.
    • Any inflammatory condition increases your risk of cardiovascular disease, and if you smoke that risk is increased further.
    • We strongly encourage you to stop smoking.
    • Please contact your GP surgery for Smoking cessation service  or Call the free Smokefree National Helpline on 0300 123 1044.
  • How do I find out my test results?
    • We will give you the results of any investigations at your next review, or sooner if appropriate. A copy of your results will be available to your GP.
  • Can I contact the Rheumatology team by telephone or email?
    • For any general medical enquiries you should contact your GP in the first instance.
    • You can contact rheumatology department via the advice line on 01752 439688 or email plh-tr.rheumatologypatientsadvice@nhs.net. This is intended to supplement the advice of your GP, not replace it.

 

Steroid Injections

  • Can I have a steroid injection before my holiday / special occasion?
    • If your arthritis is particularly active we may consider giving you a steroid injection to settle your symptoms especially if you are waiting for new treatments to start working.
    • However, steroids can be harmful so we do not routinely offer this before holidays or other special occasions. If you require this please discuss it with your GP or the Rheumatology nurses who will decide if it is appropriate.
  • How many times can I have a steroid injection?
    • There is no rule about the number of steroid injections a person can have, but long-term continued steroid use is associated with significant side-effects so repeated injections are best avoided and should only be used if your condition has flared.
    • This is the reason many doctors limit the number of injections they offer to patients. If a steroid injection wears off quickly, or does not improve things, then repeating it may not help either.
    • If you need steroid injections often, it may be a sign that your disease is not well-controlled, and we may need to think about making changes to your medication.

 

Conception and pregnancy

  • What happens if I become pregnant / father a child?
    • Some of the drugs used to treat arthritis can harm an unborn baby. We recommend that you let your rheumatologist know if you are planning to become pregnant or father a child.
    • Your treatment may need to be changed before you stop using contraception.
    • If you have an unplanned pregnancy, and are stopping / have recently stopped taking regular medication for your arthritis, please seek advice from your rheumatology team as soon as possible.

 

Your employment

  • Can you sign me off work?
    • If you have been unwell, and not able to go to work for up to seven days, you do not need a Fit Note unless there are limitations that your workplace has imposed on you.
    • Certificates to return to work after seven days or in limited circumstances are provided by your GP.
    • If you have had orthopaedic surgery, the team responsible for looking after you will also provide this.
  • Can you complete my PIP paperwork?
    • You should see your GP for assistance if needed. The rheumatology team cannot usually help you to fill this out however may provide advice if required in unusual circumstances or provide a medical report if necessary.

 

Taking your medication

  • How long before my new medication takes effect?
    • Most disease-modifying medications (DMARDs) take 8-12 weeks to be effective, particularly if they require a gradual dose increase. Some people notice an improvement earlier than this.
  • When should I take my medication?
    • Some medications need to be taken on an empty stomach or separately from other drugs. Full instructions are clearly stated on the packaging or accompanying leaflet.
    • Some medication such as anti-inflammatory (NSAID) drugs should always be taken with or immediately after food. Again, this should be clearly stated on the drug packaging.
    • Methotrexate is only to be taken once weekly, on the same day each week.
    • It is important to take all medication at the correct dose and at regular intervals as recommended.
  • Should I stop any of my medications before going into hospital for surgery?
    • Depending upon the reason for your admission, we may advise you to temporarily stop some or all of your treatment. However, you should continue to take all prescribed medication unless specifically advised to do otherwise.
    • Biologic treatment may need to be stopped before surgery and can usually restart one to two weeks after surgery, once the wound is healed and you are free of infections. Whether to stop and when depends on multiple factors. If you have surgery planned contact the rheumatology team for advice.
    • If you are on Rituximab ideally surgery should be planned 4 months after the infusion.
  • Do I need to stop any of my medications for dental treatment?
    • No, we recommend that you continue on your medication  unless you have dental infection and you are taking antibiotics.
    • If you are having significant dental treatment and you are on osteoporosis treatment please let your dentist know or contact us to discuss.
  • For how long do I have to continue my medication and can I ever stop it?
    • Most patients stay on their medications for a number of years. The aim of treatment is to get the condition into remission, which means a significant reduction in the symptoms of inflammation, but it doesn't necessarily mean that the condition has gone.
    • The more aggressively we treat inflammatory arthritis at presentation, the more likely we are to achieve and maintain remission.
    • Not everyone will be able to stop their medications, but most should be able to reduce the dose and number of medications they take once their disease is under control. We will aim to ultimately get you on the minimum amount of medication to keep you well.
    • With any chronic inflammatory condition flares may occur and should not be seen as a sign of treatment failure, though if your flares increase in frequency or severity we will need to adjust or escalate your treatment.
  • Can I drink alcohol whilst on these medications?
    • Some medicines used to treat your arthritis are processed by your liver and when taken with alcohol can increase the risk of liver side-effects.
    • We recommend that you have no more than 14 units of alcohol a week.
    • Avoid  “binge-drinking” (that is do not drink large amounts of alcohol on a single occasion)”

Taking Methotrexate

  • Is it OK to continue to take anti-inflammatory drugs (NSAIDs) and aspirin whilst on Methotrexate?
    • Methotrexate can theoretically interact with anti-inflammatory drugs including aspirin.
    • This is not a concern with the dosages of Methotrexate prescribed for the treatment of arthritis, however, long-term anti-inflammatory use is associated with an increased risk of gastric, kidney and cardiovascular problems and if at all possible should be avoided
  • Why do I need to take folic acid after Methotrexate each week?
    • Methotrexate may be associated with side-effects such as mouth ulcers and these can be reduced or improved with folic acid.

Side-effects

  • What should I do about my medication if I have diarrhoea and vomiting?
    • If you are vomiting and unable to keep food down, it is sensible to omit your rheumatology medication while symptoms persist. When things have settled, start taking your medication again: however, if symptoms come back, then the symptoms may be due to the treatment.
    • If you are taking Methotrexate in tablet form, it may be possible to change this to the injectable preparation. This is given under the skin, bypassing the gastrointestinal system, so less likely to cause side-effects such as nausea, vomiting and diarrhoea. If you would prefer this, please discuss with the Rheumatology team at your next appointment.
  • I feel sick after taking my methotrexate, should I stop taking the medication?
    • Feeling sick (nausea) can be a side-effect of methotrexate especially when treatment starts. This normally gets better but for some people it may continue.
  • This feeling may be helped by:
    • taking the methotrexate with or after food
    • taking the methotrexate just before you go to bed; you may be able to sleep through the feeling of sickness
    • making sure you take your folic acid
    • switching to injectable methotrexate.
    • taking an anti-sickness tablet the day prior to MTX may help
  • Sometimes the dose of folic acid can be changed but this should only be done after speaking to a doctor. Your doctor may tell you to take another tablet to reduce the feeling of sickness. The Rheumatology team may also change your methotrexate tablets to an injection once a week.
  • It is important that you take your methotrexate regularly so do not stop the drug without discussing it with the Rheumatology team or your doctor first.
  • What should I do if I have side-effects from my treatment?
    • Unfortunately some of the medications that are used to treat rheumatic diseases can cause side effects such as:
      • nausea
      • diarrhoea
      • vomiting
      • headache
      • dizziness
      • mouth ulcers
      • sore throats
      • rashes
    • Rarely, patients can develop shortness of breath and/or a dry cough, which may require further investigation.
    • It is important to report any side-effects, even if not listed above, and seek advice from your GP or the Rheumatology team about continuing treatment.

 

  • What can I do about injection site reactions?
    • Injection site reactions include redness, itchingpain or swelling at the injection site. They mostly occur one to two days after an injection and go away within three to five days. They are most common during the first few months of treatment.
    • It may help to apply a cold compress to the site. Anti-histamine tablets or creams available from your chemist can help.
    • Injection site reactions can be due to the way an injection has been given. Try changing where you give the injection each time: you can inject into the front of the thigh and abdomen.
    • If you have pain, redness, or swelling around the injection site that doesn't go away, or gets worse, please email us on plh-tr.rheumatologypatientsadvice@nhs.net or telephone us on 01752 439688.
    • If you keep having problems with reaction we may need to check the way you are doing the injection.

Holidays and travel

  • I am going on holiday; what about my medication, do I need a travel letter?
    • You need to take your medication with you, including any injections you need, when you go on holiday.
    • If you get your prescription from your GP, please get in touch with them in good time to request extra medication for when you are on holiday.
    • If we supply your medication, please contact us for a travel letter if you are taking injections with you on a plane.
    • Keep your medication in your hand luggage if you are flying.
    • Some medicines need to be kept cool – if you are uncertain about how to transport it please feel free to discuss with our nurses or your local pharmacist.
  • Is it OK to miss one or more injections (Methotrexate or biologic therapies) while I am away on holiday?
    • Ideally your medication schedule should not be interrupted as this increases the risk of your condition flaring.
    • If you have weekly Methotrexate injections it may be possible to have a small supply of tablets prescribed for you to use instead during your holiday, but this is not an option if you have previously been intolerant of these.
    • People who regularly self-inject biologics drugs such as Etanercept (Enbrel) or Adalimumab (Humira) may continue while away, but ensure that refrigeration facilities are available.
    • Before you go, make sure you have sufficient supplies of your medication and 'sharps' bins for disposal of used syringes. Request a holiday letter from the delivery company or Rheumatology team to have with you when taking injectable medication through customs.
  • Does it matter if I miss one or more routine blood monitoring tests whilst I am away on holiday?
    • Obviously it may not be practical for you to arrange blood monitoring tests if you are away from home. Where possible, schedule tests for a week or so before your departure and as soon as possible after your return.
    • If you are planning an extended trip please discuss this with your GP as alternative arrangements may need to be made.

Interactions with other medications

  • Can I take over-the-counter pain medications as well as my prescribed drugs?
    • Always check over-the-counter medications for possible interactions with prescribed drugs.
    • Simple painkillers such as paracetamol are usually safe providing you do not exceed the maximum recommended dose and ensure that none of your prescribed drugs also contain paracetamol, since this could result in accidental overdose.
    • Do not take over-the-counter non-steroidal anti-inflammatory drugs (NSAIDs) such as Nurofen if you are already taking prescribed NSAIDs. Avoid NSAIDs if you have previously suffered any adverse effects or have a history of gastritis or stomach ulcers. Also avoid NSAIDs if you are asthmatic or have high blood pressure unless your GP advises you to take them.
  • Will my arthritis medications interfere with my other prescribed medications?
    • Bring a list of all your medications with you to every appointment: we take all your medications into account when making prescribing decisions.
  • Can I use complementary or herbal remedies?
    • Complementary or herbal medicines may interact with prescribed drugs. If you wish to use these therapies, please discuss this with us at your appointment. For more information please visit Arthritis Research UK and Arthritis Care.

 

Prescription and delivery

  • My prescription has expired - can my own doctor (GP) renew this for me?
    • Yes, your doctor will receive a letter regarding any changes to your treatment made in clinic and will renew your prescription. Biologic drugs are the exception and are only prescribed via the rheumatology department. You will need to attend your clinic appointments for us to be able to do this. The prescription is then managed with the homecare delivery company.
  • The delivery company says my prescription has run out – what should I do?
    • Your prescription is managed by the rheumatology nurses in conjunction with the delivery company. Usually the delivery company asks the nurses for your repeat prescription to be renewed well before it is going to expire but occasionally this does not happen in time.
    • The rheumatology nurses will renew your repeat prescription if you have attended your scheduled clinic appointments and had any relevant blood tests or tests that have been asked for.
    • If you do not attend your appointments, your prescription for biologic drugs will be stopped. You may need to phone the rheumatology nurses to discuss your repeat prescription.
  • My drugs have not been delivered - what should I do?
    • Please contact the company that delivers your medications to reorganise the delivery.
    • You may ask to have medications delivered to you at work, or an alternative address, to make things easier, but do ensure that there is refrigeration available.
    • If you have ongoing delivery problems you cannot solve yourself with the company please contact the rheumatology nurses.

Blood tests

  • Why are blood tests important?
    • Blood tests are essential for you to continue to receive your prescriptions of disease-modifying anti-rheumatic (DMARD) or biologic medication. The most common reason for an interruption of medication supply is a lack of a blood test results or a blood test which has been performed too long ago to be reliable.
    • It is important to plan ahead for your blood test appointments, either if you have these performed at the hospital or at your local surgery. If you are unsure when your next blood test is due, please contact the advice line on 01752 439688 or email plh-tr.rheumatologypatientsadvice@nhs.net.
  • Which blood tests do I require?
    • The standard rheumatology blood tests required for a disease-modifying anti-rheumatic drug (DMARD) and biologic medication includes a full blood count (FBC), alanine transaminase (ALT), Creatinine and c-Reactive Protein (CRP).
    • The frequency of these blood tests will depend on what medication you are on and how long you have been on it. We recommend you keep a diary of your blood tests to help you plan ahead.
    • If you are unsure what frequency of blood tests is required for your medication, please contact the nursing team.
  • What do my blood results mean?
    • We monitor bloods when DMARDs and biologic medicines are used. This is to ensure that the drugs are being used safely and not causing any harmful effects.

Blood tests commonly monitored by the rheumatology service

  • Hb (Haemoglobin)
    The iron-rich molecule of red blood cells which transport oxygen around the body.
    Normal values for a man are 130-180.
    Normal levels for a woman are 115-165.
  • MCV (Mean Cell Volume)
    A measurement of the average volume of red blood cells (this can vary if you have low iron stores or if you have pernicious anaemia).
    Normal values 82.0-98.0.
  • WCC (White Cell Count)
    Blood cells of the immune system. There are five types and this reflects the total number of all types.
    Normal values 3.6-11.
  • Neutrophils
    One of the white blood cells important in fighting bacterial infections. This can be affected by inflammation and medications.
    Normal values 3.6-7.5.
  • Lymphocytes
    White blood cells important in fighting viral infections.
    Normal values are 1.0-4.0.
  • Platelets
    Blood cells involved in maintaining blood clotting.
    Normal values are 140-440.
  • ALT (Alanine Transaminase)
    A liver enzyme that reflects liver health.
    Normal value is less than 40.
  • Creatinine
    The level of creatinine in the blood is an indicator of how well the kidneys are working.
    Normal value is 59-104.
  • CRP (c-Reactive Protein)
    A protein that measures levels of inflammation. It is helpful in guiding how active your disease is and whether your treatment is effective, but it is non-specific, and may rise for other reasons such as infections or viruses.
    A normal level is less than 5.
    Patients who are overweight often have a higher baseline CRP and in the absence of any inflammation or infection levels can range from 10-20.

It is important to note that all blood values will fluctuate slightly through the day and you may see in your blood monitoring booklet that occasionally blood values fall outside of the normal range. Often this is not a matter of concern. Should there be any cause for concern, your GP who reviews all blood tests as a part of blood monitoring will contact you with appropriate advice. Your GP will contact the Rheumatology team if they have ongoing concerns.

 

FAQ’s about infections and vaccinations

Infections

  • I have an infection and I am taking antibiotics - should I stop taking my other medications?
    • If you are taking methotrexate, leflunomide, azathioprine, mycophenolate, tacrolimuas, cyclosporine, apremilast we advise you to omit this if you develop an infection, since its immunosuppressive effects may hinder your recovery.
    • You should not take biologic medication if you are unwell due to an infection or on antibiotics; notify the Rheumatology team if your illness persists for more than a week.
  • I have been in contact with somebody with shingles, what should I do?
    • If you are on a drug that suppresses your immune system (i.e. reduces your body's defence mechanism against infections) and if you come in close contact with anyone who has chicken pox or shingles you should contact your GP for advice as treatment may be required.

Drugs that can alter your response to infection include:

  • methotrexate
  • leflunomide
  • ciclosporin
  • azathioprine
  • mycophenolate
  • biologic treatments
  • JAK inhibitors such as tofacitinib, baricitinib

Close contact means:

  • being in the same room as someone who has shingles for more than 15 minutes or
  • having immediate contact with someone who has shingles on many parts of their body or where it is exposed, e.g. on the face

Where possible you should keep away from anyone you know who has chicken pox or shingles.

  • What should I do if I get chicken pox whilst on immunosuppressants?
    • Notify your GP as soon as possible as you may need treatment to minimise the severity of the disease.

 

Vaccinations

  • Can I have vaccinations whilst I am on medication for my condition?
    • If your immune system is suppressed due to medication, it is particularly important that you are adequately protected. For this reason the flu vaccination (which is inactivated) is recommended on a yearly basis if you are on immunosuppressant drugs or qualify for other reasons such as age or other medical conditions. Likewise, the pneumonia (pneumococcal) vaccine is recommended for all patients with rheumatological conditions on immunosuppressive drugs.
    • If you are receiving treatment with immunosuppressive drugs such as methotrexate, leflunomide, azathioprine or biologics you should avoid 'live' vaccinations: these include oral polio vaccine, yellow fever vaccine, german measles (Rubella) and herpes zoster vaccine (shingles). An alternative inactivated polio vaccine is available, if required.
    • You should also avoid contact, where possible, with adults or children who have received the 'live' oral polio vaccine, for six weeks after vaccination: in particular you should not change babies' nappies since they will excrete the live polio virus in their faeces for this time.
    • Vaccination against yellow fever may be an entry requirement for some countries so discuss this with your GP before making travel arrangements. If you are planning to travel abroad, you should seek advice from your GP at least six weeks before your departure since some vaccinations may need ordering for you.

 

  • Should I have the flu and/or pneumonia vaccinations?
    • If you are on immunosuppressive medication such as Methotrexate and anti-TNF (Biological treatment) the flu vaccination (which is inactivated) is recommended on a yearly basis. Likewise, the pneumonia (pneumococcal) vaccine is recommended for all patients with rheumatological conditions on immunosuppressive drugs.

Sources

https://www.ouh.nhs.uk/rheumatology/information/patients/useful-links.aspx

https://www.guysandstthomas.nhs.uk/our-services/rheumatology/patients.aspx#na

https://www.rbch.nhs.uk/index.php?id=2942

https://www.nras.org.uk/frequently-asked-questions

 

 

 

Was this page helpful?

Was this page helpful?
Rating

Please answer the question below, this helps us to reduce the number of spam emails that we receive so that we can spend more time responding to genuine enquiries and feedback. Thank you.

*