Rheumatology FAQ's

I’m having a flare of my arthritis, what should I do?

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.

How you manage them can have a major influence on the impact they have on your overall quality of life.

It may be helpful to think of factors that may have added to your usual day-to-day pressures, as it is often an accumulation of factors that can cause a flare. It can be helpful to try and notice any triggers. Keeping a record of your daily activity and level of pain or fatigue can help with this. Have you done anything differently recently, or are you coping with any additional life events that feel quite stressful, worrying or distressing?

Think of what could be helpful to self-manage your flare. Some ideas include:

• Regular pain relief,
• Hot and cold treatment (such as wheat bags or ice packs)
• Pacing, prioritising, problem solving
• Keep active – keep gentle stretches going when possible
• Delegate or ask others for support
• Take time out for yourself

Medication

Taking your painkillers and/or anti-inflammatory tablets regularly should help to control the pain. Never exceed the maximum recommended dose. We would not advise taking NSAIDs and steroid medication together unless this has been advised by a medical professional.

You should continue to take your other usual medication. If you are taking steroid tablets, you mustn't alter the dose without consulting your GP or a member of the Rheumatology team.

Anti-inflammatory gels may be applied locally to swollen and inflamed joints following the manufacturer's instructions.

Heat or cold

Heat or cold applied to joints may reduce pain and inflammation.

• Heat: wheat bag, hot water bottle, heat pad.
• Cold: bag of ice cubes or frozen peas, wheat bag or gel pack.

These treatments may be applied for up to 15 minutes. Always place a towel between the skin and heat/cold source to prevent burning or skin damage.

Rest and exercise

During a flare it is important to 'pace' your activities. You will need to plan your day taking into consideration your increased tiredness.

Short rests in between activities may be needed but it is advisable to keep your joints moving. This will help prevent stiffness and maintain muscle tone.

If your flare has not responded to these treatments after seven days and you need further help, you should contact your GP for advice and/or treatment.

Steroids

Steroids (tablets, injection, or infusion) can be extremely helpful to settle a flare-up when it has not improved with the above measures.

Steroids will not cure your inflammatory disease, but they can help reduce inflammation.

Steroids should however be used sparingly, in the smallest possible dose and for the shortest time because of their side-effects.

When can I have a steroid injection?

If your inflammatory arthritis is active and has not responded to the above measures, we may consider a steroid injection to manage your symptoms.

We can also consider giving you a steroid injection as a “bridging treatment” when you are waiting for new medication to start working.

How often 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.

Special occasions

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. Occasionally we prescribe a short course of steroids instead, and will provide you with instructions on reducing the dose.

However, regular use of 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 clinician at your consultation, who will decide if it is appropriate

Injuries

If you have suffered an injury please see your GP. If your GP has ongoing concerns they may refer you for further treatment.

If you find that one of your joints is hot and swollen, if you have a temperature or feel unwell please seek more urgent advice.

I’m having a flare of my Giant Cell arteritis (GCA or temporal arthritis), what should I do?

A 'flare' of GCA may result in some of the following symptoms:

• increase of headache or scalp tenderness
• Change in vision
• pain in the jaw or the tongue when chewing food
• increased tiredness
• general 'unwell' feeling
• night sweats / fever / weight loss

Please contact your GP and arrange to be seen urgently. We would advise that you have repeat blood tests, to include markers of inflammation (CRP, PV and ESR) if there is a concern that you have a flare in your GCA, BEFORE, your steroid dose is altered.

Medication

The Rheumatology team may prescribe new medication that we think would be for your benefit, or we may ask your GP to start it. If we have started you on a disease-modifying medication, including methotrexate, sulfasalazine, leflunomide, azathioprine, mycophenolate, we will prescribe it for the first 3 months, until you are on a stable dose and your bloods tests are stable.

Some of the prescribed treatments require blood tests to be taken at different times. These can range from monthly to every 3 months.

Your GP will receive copies of each of your clinic consultation letters. The letters will detail any discussions that took place at the consultation and give information about when you will need blood tests. You will also receive a copy of these letters.

If the medication you have been prescribed is a Disease-Modifying Anti Rheumatic Drug (DMARD), we will monitor your blood tests for the first 3 months of your treatment. After this, your GP will take over your care.

The monitoring starts with blood tests every 2 weeks and will continue for the first 6 weeks of your treatment.

If your blood test results continue to be satisfactory, you will then have monthly blood tests until your GP takes over your care at 3 months. Further blood tests will then be arranged and the results will be monitored and treatment managed at your GP’s surgery.

The Rheumatology team will provide all prescriptions until we have confirmation from your GP that they are satisfied that you are stable enough for them to take over your care.

The main DMARDs which will need monitoring include:

I have started my medication, who should I inform?

We do not need to be informed, unless we have specifically asked you to notify us then you have started your medication. If you have started a new biologic medication, please contact the Rheumatology Admin team at ghn-tr.rheumybloodsandbiologics@nhs.net to let us know so we can update our records.

I need a new prescription, who should I contact?

The Rheumatology team will provide all prescriptions until we have confirmation from your GP that they are satisfied that you are stable enough for them to take over your care. You will receive a copy of our letter to your GP asking them to take over your prescription. Until you have received this letter, please request a repeat prescription by contacting the DMARDs team at ghn-tr.dmards.rheumatology@nhs.net Alternatively you can call the DMARD prescription order line number is 0300 422 8889 – available 24/7.

There is only a facility to leave a message, it is not a phone number that will be answered.

I think that I am experiencing side effects to my rheumatology medication. What should I do?

All medications can have potential side effects. It may also be worth considering other causes of symptoms, such as allergies (hay fever, known food intolerance) and new washing detergents.

Some of our medications can cause side effects such as nausea, diarrhoea, vomiting, headaches, dizziness, mouth ulcers, rashes, and sore throat.

You must report any side effects (even if not listed above) and seek advice from your GP.

Rarely, patients can develop shortness of breath and/or a dry cough, which may require further investigation.

Here are some ways to help minimise potential side effects:

• Take your methotrexate at night time to minimise feelings of nausea
• Increase your folic acid to 6 out of 7 days to help with methotrexate side effects
• Ask about a tablet to protect your stomach if you are taking oral steroids for a long period or a non-steroidal anti-inflammatory (ibuprofen).
• If you are having side effects from sulfasalazine, and have just started this, it might help to increase your sulfasalazine dose at a slower rate

To help minimise injection site reactions:

Injection site reactions are different to an allergic reaction they are generally mild and resolve after a few days. The symptoms can include mild swelling, itching, pain, redness, warmth, rash. To help with these symptoms some suggestions include:

• Please take injections out the fridge 30 minutes before use.
• Ensure you inject in the manner you have been taught by the nurses in your rheumatology team or home care provider.
• Use a cold pack before and after the injection
• Use pain relief such as a non-steroidal anti-inflammatory
• Take an Antihistamine
• Use over-the-counter hydrocortisone cream

If you feel you have side effects that have not responded to the above, or the reaction is larger than your fist, please call the advice line for further input.

If you have an all over body rash, chest tightness, severe itching, hives (fluid-raised bumps), or swelling of the lips, tongue or throat please seek urgent medical advice.

I am going on holiday. What should I do with my medication?

We recommend that you carry a copy of your last clinic letter or repeat prescription with you, and if flying, carry your medication in your hand luggage. It is recommended all medicines are clearly labelled and in their original packaging.

Some medications need to be kept in the fridge and only taken out shortly before the injection is due. This means you need to take precautions when travelling.

Keeping your medication cool

• Whilst travelling you can invest in a medications cool bag (such as ones made to transport diabetic medications).
• You need to take your medication in the cabin as the hold can be too cold.
• You can get a travel letter from your home delivery company (Sciensus, Lloyds pharmacy clinical homecare, Healthnet) which lets your airline know that you should be taking your injections on board a flight. Please let your home delivery company know in advance.
• When you are at your destination you need to make sure your items are kept in a cool, dark space to ensure the integrity of the drug.
• Please ensure you can dispose of your medication safely whilst travelling.

I am due to have a operation. Do I need to stop any of my rheumatology medication?

If you are due to have a surgical procedure you should stop your biologic medication. Please check the current guidance on when to do this with the rheumatology team, as different biologic medications have different time frames to stop. Suppose you are due to have a surgical procedure. In that case, there are guidelines available for clinicians planning to perform operations at Gloucestershire Hospital Trust, with perioperative advice about DMARDs and biologics medication available to them. Your surgical team will advise you about your medication. For any surgical procedures being performed outside of Gloucestershire hospitals trust, e.g. at your dental practice or by a podiatrist, there are national guidelines that they can refer to on how to manage rheumatology medication perioperatively.

In general, you should not stop your disease-modifying drug as we would like for you to have a stable disease, this puts you in a better place to recover from your procedure.

I am feeling unwell. Do I need to stop any of my rheumatology medication?

Some of the Rheumatology medications we use can make you more vulnerable to pick up infections and you might not be able to fight the infections so well. This means some infections could become severe or very severe. It could also take you longer to recover from the infection.

It is probably best not to meet with people if you know they have a serious ‘catching’ infection. For example, a ‘diarrhoea and vomiting bug’.

My biologics medication has not been delivered. Who should I contact?

Deliveries

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 bloods 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 call Rheumatology at ghn-tr.rheumybloodsandbiologics@nhs.net to discuss your repeat prescription.

My biologics medication has not been delivered. Who should I contact?

Please contact the company that delivers your medications to reorganise the delivery.

If you have ongoing delivery problems cannot solve yourself with the company, please contact the Rheumatology Admin team at ghn-tr.rheumybloodsandbiologics@nhs.net

What do I do with the used sharps bins?

The homecare delivery company that supplies your sharps bin will collect this from you. Let them know when they next call to organise a delivery and they will bring you a replacement.

Patient Enquiries Telephone:

• Sciensus (Previously known as Healthcare At Home) : 0333 103 9499
• Lloyds Pharmacy Clinical Homecare : 0345 263 6135
• Healthnet: 0800 083 3060

I have been in contact with someone with chicken pox/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
• Adalimumab
• Etanercept
• Rituximab
• Infliximab
• Golimumab
• Abatacept.

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 get chicken pox whilst on Methotrexate, notify your GP as soon as possible as you may need treatment to minimise the severity of the disease.

Useful links

• NHS – Shingles
• NHS – Chickenpox

Is it ok for me to have vaccinations when taking medication for my rheumatology condition?

Flu vaccines, and COVID vaccines, are not live vaccines and are recommended for those who are on disease-modifying medication. In addition, you may be eligible for a shingles and RSV vaccine. Please contact your GP to check this. You do not need to stop your rheumatology medication, including steroids when having a vaccine unless we have advised you to do so. This includes the Flu and COVID vaccines.

Should you need a live vaccine e.g. for travel reasons please discuss this with your GP or at your next rheumatology consultation as live vaccines should not be administered if you are on disease-modifying medication or biologic therapy.

Live vaccines include - Varicella (chicken pox), MMR, TB, oral polio, yellow fever, and rotavirus.

My dog is due a kennel cough vaccine. Is it safe for me to be around my dog?

Live vaccines for your pets can be a risk to you as a pet owner if the bacterium that causes the condition being vaccinated against can infect people. Many bacteria would not pass to humans, so are not an issue, but ‘kennel cough’ can cause occasional infections in people. If you came into contact with the live vaccine, this could therefore put you at risk, but if your dog contracted kennel cough because they weren’t vaccinated against it, that could also put you at risk, so this needs to be weighed up.

As with all animals, dogs carry various bacteria on them, which can pose just as much, if not more of a risk to owners, yet often this gets taken for granted. As the author of the article puts it:

If your dog needs a kennel cough vaccine if at all possible, get someone else to take your dog to get vaccinated. Dogs can sometimes sneeze when the vaccine is squirted up their nostrils, so this is the time that you are most likely to come into contact with the live vaccine. It might also be an idea for you (or someone else) to wipe your dog’s face after they have been vaccinated. You should also minimise close contact with their face and wash your hands after petting them, especially around the face.

Where can I have my blood test?

The Rheumatology team will be responsible for prescribing your medication and monitoring your blood results during treatment. If you are on biologic medication prescribed by the rheumatology team, we will be responsible for prescribing it and monitoring your bloods throughout treatment.

Some of the prescribed treatments require blood tests to be taken at different times. These can range from monthly to every 3 months.

Your GP will receive copies of each of your clinic consultation letters. The letters will detail any discussions that took place at the consultation and give information about when you will need blood tests. You will also receive a copy of these letters.

If the medication you have been prescribed is a Disease-Modifying Anti Rheumatic Drug (DMARD), we will monitor your blood tests for the first 3 months of your treatment. After this, your GP will take over your care.

The monitoring starts with blood tests every 2 weeks and will continue for the first 6 weeks of your treatment.

If your blood test results continue to be satisfactory, you will then have monthly blood tests until your GP takes over your care at 3 months. Further blood tests will then be arranged and the results will be monitored and treatment managed at your GP’s surgery.

The Rheumatology team will provide all prescriptions until we have confirmation from your GP that they are satisfied that you are stable enough for them to take over your care.

The main DMARDs which will need monitoring include:

• Methotrexate
• Sulfasalazine
• Leflunomide
• Azathioprine
• Mycophenolate mofetil
• Cyclophosphamide

Where can I have a blood test?

Blood tests can be taken at your GP’s surgery. Sometimes your GP will provide the blood form, if not, blood forms can be posted to you from the Rheumatology department.

To request a blood form, please email the Rheumatology Admin team at ghn-tr.rheumybloodsandbiologics@nhs.net

Your GP will be aware of the blood tests needed as they will have received copies of your clinic consultation letters containing this information.

Blood tests can also be arranged at one of the drop-in clinics at West Block Out Patient Department, Cheltenham General Hospital or the Edward Jenner Unit, Gloucestershire Royal Hospital, between the hours of 8:30am and 4:30pm, Monday to Friday.

Alternatively, blood samples can be taken at the Quayside Community Diagnostic Centre, Monday, Tuesday, Thursday and Friday; 9.00am – 12.00pm. (appointments only). Appointments can be arranged by contacting the Diagnostic Centre on 0300 422 3900 or 0300 422 5293 No walk-ins.

The Rheumatology team will let you know of any abnormal blood results which may need us to make changes to your medication. Your GP will be responsible for this once they have taken over your care.

We send out automated reminders when you are due for a blood test. If you miss a blood test, the computer system will alert us. Repeat prescriptions cannot be issued until you have had a blood test and the results received.

I have changed the date of my blood test, who should I inform?

We only need to know if you have changed the date of your blood tests if we have asked you to get your bloods done. Please email the Rheumatology Admin team at ghn-tr.rheumybloodsandbiologics@nhs.net

I am unable to get my bloods done in the timescale required what should I do?

If you have been unable to get an appointment at your GP surgery you can have your bloods done at one of the drop-in clinics at West Block Out Patient Department, Cheltenham General Hospital or the Edward Jenner Unit, Gloucestershire Royal Hospital, between the hours of 8:30am and 4:30pm, Monday to Friday.

Alternatively, blood samples can be taken at the Quayside Community Diagnostic Centre, Monday to Friday, 9:00 am to 5:00 pm (appointments only). Appointments can be arranged by contacting the Diagnostic Centre on 0300 422 3900. You will require a hospital blood form.

Altered blood tests

If you are having blood tests to monitor your disease modifying medication your GP may contact us and you to get further advice, for example if your liver enzymes are higher than normal.

This can happen from time to time and is usually returns to within normal limits when blood tests are rechecked.

Sometimes the cause can be easily identified – such as a higher intake of alcohol than normal just before your blood test. Everyone is different and we may have different advice for different people regarding altered blood tests.

If your blood tests are identified as being too high or too low:

• Please stop your medication and contact your GP for advice
• We will then make a plan to have further blood tests or investigations and make a plan to restart your mediation at a certain point.

Blood tests we commonly monitor

• Hb (Haemoglobin)

The iron-rich molecules of red blood cells 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 are important in fighting bacterial infections. This can be affected by inflammation and medications.

Normal values 3.6-7.5.

• Lymphocytes

White blood cells are 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 helps guide 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 8.

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, 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.

Is it ok for me to do exercise?

Regular exercise is recommended for everyone, not just people with inflammatory joint disease.

Exercise can help reduce your risk of many conditions, including heart disease and many forms of cancer.

It is helpful to do a mixture of aerobic, stretching and strengthening exercises.

Exercising regularly can help relieve stress, help keep your joints mobile, and strengthen the muscles supporting your joints.

Exercise can also help you lose weight if you're overweight, which can put extra strain on your joints.

It is important to find a balance between rest and exercise. Rest sometimes makes inflamed joints feel more comfortable, but without movement your joints will stiffen and your muscles will become weaker. When having a flare ensure that you take the affected joints through the full range of motion regularly.

Find the best activities and the right balance for you. Finding something you enjoy doing is important so you can continue for life!

It's usually best to increase the amount of exercise you do gradually.

If a particular activity causes your joints to become warm and swollen, or it causes severe pain, then stop and rest. If it does not cause problems, then it is fine to continue.

High-impact activities, including contact sports like rugby and football, are more likely to cause problems.

Try low-impact activities that put less strain on your joints, such as swimming, cycling, walking and aqua aerobics.

Strengthening exercises such as squats or free weights are safe to do and are beneficial

If you need more guidance, physiotherapists can advise you on suitable types of exercise. You can refer yourself to a local NHS physiotherapist.

I am thinking of taking complementary or alternative medications. It is safe for me to do so?

If you have any questions regarding over-the-counter supplements or herbal remedies and their place in your management plan, then please discuss this with us at your appointment before taking them. Some of these therapies interact with other medications.

Do I need to follow a special diet?

A healthy diet is recommended for everyone, not just people with inflammatory joint disease.

Diet can help reduce your risk of many conditions, including heart disease and many forms of cancer.

Is it ok for me to drink alcohol with my rheumatology medication?

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.

If you take Leflunomide you should not take more than 4 units of alcohol a week.

Avoid “binge-drinking” (that is do not drink large amounts of alcohol on a single occasion).

• NHS – Calculating alcohol units

I have been advised to stop smoking. Why is this?

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.

I am planning to have a baby/father a child. Should I stop my rheumatology medication?

Some 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 GP as soon as possible.

I need advice about working and benefits:

Information for employers

Please see 'Useful links' for good sources of information to share with your employer.

Time 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 been admitted to the hospital under the Rheumatology team we will provide you with your certificate before you leave the hospital.

If you have had orthopaedic surgery, the team responsible for looking after you will also provide this.

PIP paperwork

If you need assistance with PIP paperwork, please talk to your GP.

The Rheumatology team cannot normally help, but can provide advice in unusual circumstances or a medical report if necessary.

What number do I contact if I have a question about my appointment or want to change/cancel my appointment with rheumatology?

Please contact the Outpatient booking office 0300 422 5987

I have been referred for a scan-how do I contact Radiology to find out when my appointment is, or if I need to change my appointment?

Please visit the radiology page for information on how to contact them: Radiology (scans)

I have had a diagnostic test-how do I find out the result of this?

Once you have had a scan it may take several weeks for us to get the result. Once we have reviewed the report/result of your investigations we will write to you and your GP with the result of any investigations that you have had.

I have been discharged from rheumatology- how do I get an appointment to be seen again?

You will need to be referred to rheumatology by your GP, so please contact your GP to request this.