Concerns about your condition/treatment
Q: What should I do if my arthritis is flaring?
A: Please refer to our Flare Care Leaflet.
Use maximum doses of pain relief, such as Paracetamol 1g x four doses in 24 hours and anti-inflammatory drugs if prescribed, such as Ibuprofen 400mg x three doses in 24 hours. Ask your GP if you cannot tolerate these or 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 your GP for further advice. Your GP may advise a course of oral steroid or an intramuscular steroid injection to settle your flare. If your GP feels this is warranted you may need to email us at [email protected]
Q: My joint is swollen and I think it may need aspirating and injecting, what should I do?
A: 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 email us at [email protected].
Q: I have injured myself; what should I do?
A: If you have suffered an injury please see your GP, contact NHS 111 or attend your local A&E department. If your GP has ongoing concerns they may refer you for further treatment.
Q: Will smoking affect my condition?
A: 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. Further information is available at https://www.nras.org.uk/smoking-and-rheumatoid-arthritis
Q: How do I find out my test results?
A: 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.
We can send you copies of the letters which we send to your GP if you have requested this.
Q: When do I need to contact my hospital doctor?
A: Contact your Rheumatology team urgently, if your joint becomes red, hot and swollen and you have a temperature or feel unwell: this may suggest that your joint is infected.
If so, you may need hospital treatment. If you have an acute hot joint out of hours or if the team is unavailable over the weekend or Bank Holidays, please attend your local Emergency Department or contact NHS 111.
You may also need to contact your doctor if:
- your flare doesn’t begin to settle after a week or two
- you think you may need a joint injection (some GP’s are able to do this for you)
- your painkillers aren’t strong enough
- you need advice about steroids
- you have developed a side-effect from your medication.
Q: Who should I contact with general enquiries about my health?
A: For any general medical enquiries you should contact your GP in the first instance.
The email [email protected] is intended to supplement the advice of your GP, not replace it.
Q: What happens if I become pregnant / father a child?
A: 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 email [email protected] so we can arrange a time to discuss this further with your consultant.
Q: Is there information I can give my employer about my condition?
A: Please see ‘Useful links‘ for good sources of information to share with your employer.
Q: Can you sign me off work?
A: 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 been admitted to hospital, the ward will provide you with your certificate before you leave the hospital.
Q: Can you complete my PIP paperwork?
A: You should see your GP for assistance if needed. A specialist report is not normally required, however, we may be able to provide advice in unusual circumstances or provide a medical report if specifically requested.
Q: Can I take part in research or clinical trials?
A: We may have current studies related to RA, AS and PSA.
All research is optional, and not all studies involve drugs: most require a few minutes of your time and possibly a small blood sample.
If you are interested, do please contact us on [email protected] and we can pass your details onto our research team.
Q: What do my blood results mean?
A: 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 are 120-160.
- 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 81-101.
- WBC (White Blood Cell Count)
Blood cells of the immune system.
Normal values 3.6-11.
One of the white blood cells important in fighting bacterial infections. This can be affected by inflammation and medications.
White blood cells important in fighting viral infections.
Normal values are 1.0-4.0.
Blood cells involved in maintaining blood clotting.
Normal values are 140-425.
- ALT (Alanine Transaminase)
A liver enzyme that reflects liver health.
Normal value is less than 40.
The level of creatinine in the blood is an indicator of how well the kidneys are working.
Normal value is 45-84.
- 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, may vary depending on the area you live in 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, the GP who reviews all blood tests as a part of blood monitoring will contact you with appropriate advice. The GP will contact the Rheumatology team if they have ongoing concerns.
Taking your medication
Q: How long before my new medication takes effect?
A: 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.
Q: When should I take my medication?
A: Some medications need to be taken on an empty stomach or separately from other drugs. If this is the case we will tell you when the treatment is first prescribed. 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.
Q: Should I stop any of my medications before going into hospital for surgery?
A: 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 and Methotrexate may need to be stopped for one to two weeks before surgery, and can usually restart one to two weeks after surgery, once the wound is healed and you are free of infections.
Q: Do I need to stop any of my medications for dental treatment?
A: No, we recommend that you continue on your medication. However, there are specific instances when treatments are stopped, please email [email protected] for further information.
Q: For how long do I have to continue my medication and can I ever stop it?
A: 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.
Q: Can I drink alcohol whilst on these medications?
A: 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.
Q: Is it OK to continue to take anti-inflammatory drugs (NSAIDs) and aspirin whilst on Methotrexate?
A: 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.
Q: Why do I need to take folic acid after Methotrexate each week?
A: Folic acid helps protect the healthy cells in your body and reduces some of the side effects of Methotrexate. It can make you less likely to be sick (vomit) or to experience diarrhoea.
Q: What should I do if I get chicken pox whilst on Methotrexate or biologic medications?
A: You should stop taking this medication and notify your own GP as soon as possible as you may need treatment to minimise the severity of the disease.
Q: What should I do about my medication if I have diarrhoea and vomiting?
A: 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, please email us [email protected].
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.
Q: I feel sick after taking my Methotrexate, should I stop taking it?
A: Feeling sick (nausea) is a common 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 once a week
- taking another tablet to reduce the feeling of sickness
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.
Q: What should I do if I have side-effects from my treatment?
A: Unfortunately some of the medications that are used to treat rheumatic diseases can cause side effects such as:
- mouth ulcers
- sore throats
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 and the Rheumatology team about continuing treatment.
Q: What can I do about injection site reactions?
A: Injection site reactions include redness, itching, pain 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
- Check your injection technique – we may need to check the way you are doing the injection
- Remember to change the injection site each time you give the injection
If you have pain, redness, or swelling around the injection site that doesn’t go away, or gets worse, please email us [email protected].
Q: Can I have a steroid injection before my holiday/wedding/special occasion?
A: 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, regular use of steroids can be harmful, so we do not routinely offer this before holidays or other special occasions. If you want to discuss this further please contact your GP or the [email protected] as this can be organised if it is appropriate.
Q: How many times can I have a steroid injection?
A: 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.
Q: I am going on holiday; what about my medication, do I need a travel letter?
A: 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, make sure you have sufficient supplies of your medication and ‘sharps’ bins for disposal of used syringes
- Please request a travel letter if you are taking injectable medication through customs with you, onto a plane [email protected]
- Keep your medication in your hand luggage if you are flying
Q: Is it OK to miss one or more injections (Methotrexate or biologic therapies) while I am away on holiday?
A: Ideally your medication schedule should not be interrupted as this increases the risk of your condition flaring. People who regularly self-inject biologic drugs may continue while away, but ensure that refrigeration facilities are available.
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.
Q: Does it matter if I miss one or more routine blood monitoring tests whilst I am away on holiday?
A: 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 Rheumatology team, as alternative arrangements may need to be made.
Q: 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, have high blood pressure or take anti-coagulation medications, unless your GP or Rheumatology team advises you to take them.
Q: Will my arthritis medications interfere with my other prescribed medications?
A: Bring a list of all your medications with you to every appointment: we take all your medications into account when making prescribing decisions.
Q: Can I use complementary or herbal remedies?
A: 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 Versus Arthritis https://www.versusarthritis.org/about-arthritis/managing-symptoms/diet/.
Q: My prescription has expired – can my own doctor (GP) renew this for me?
A: Yes, your doctor will receive a letter regarding any changes to your treatment made in clinic and will renew your prescription. However, within the first twelve weeks of commencing a DMARD, you will receive your supplies form the hospital team until we know these are tolerated. This is known as a Shared Care agreement within the Yorkshire region.
Biologic drugs are the exception and are only prescribed via the rheumatology department. You will need to attend your clinic appointments and have blood tests as requested, for us to be able to do this. The prescription is then managed with the appropriate homecare delivery company.
Q: The delivery company says my prescription has run out – what should I do?
A: Your prescription is managed by the rheumatology nurses in conjunction with the delivery companies. Usually the appropriate 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 bloods or tests that have been asked for. Usually these are every three months.
If you do not attend your appointments, or have the requested three monthly blood tests, your prescription for biologic drugs could be stopped. You may need to email [email protected] to discuss your repeat prescription.
Q: My drugs have not been delivered – what should I do?
A: Please contact the company that delivers your medications to reorganise the delivery and ensure you are available on the given delivery slot.
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 unresolved delivery problems and cannot solve these yourself with the company, please contact the rheumatology nurses on [email protected]
Q: Can I get a new yellow shared care blood monitoring booklet for my DMARD therapy?
A: Please email the team on [email protected] and we will send you another in the post. However, as your blood results are now available on our results server or via your GP (if out of area), they can be recorded electronically on our systems. Therefore, we do not routinely require the booklets to be completed. We do recognise that there is still value in giving out the booklets initially with all the general information in and also that some patients may still like a personal record of their results.
Q: I have an infection and I am taking antibiotics – should I stop taking my other medications?
A: You should stop taking most disease modifying drugs (except Hydroxychloroquine and Sulfasalazine) and any biologic treatments, whilst you have an infection requiring antibiotics. You should not stop taking steroids (Prednisolone) during an infection.
Only restart once the infection is clear and any antibiotics are completed.
Q: I have been in contact with somebody with shingles, what should I do?
A: If you have not previously had chicken pox yourself and if you are on a drug that suppresses your immune system and 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.
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, if you have not previously had chicken pox yourself.
Q: Can I have vaccinations whilst I am on medication for my condition?
A: If your immune system is suppressed due to medication, it is particularly important that you are adequately protected. If you are receiving treatment with immunosuppressive drugs such as methotrexate, leflunomide, azathioprine, or biologic therapies you should avoid ‘live’ vaccinations as they are contra-indicated: these include oral polio vaccine, yellow fever vaccine and german measles (Rubella). 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.
Q: Should I have the flu and/or pneumonia vaccinations?
A: If you are on immunosuppressive medication such as Methotrexate and Biologic 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. This should be repeated after 5 years, with a maximum of two injections per lifetime.