Having a chronic illness like Arthritis and connective tissue diseases can be emotionally challenging and you may experience feelings including depression, anxiety, uncertainty, stress and fear.

Please find some resources below if you need some advice: 

https://www.nhs.uk/conditions/stress-anxiety-depression/

https://www.mind.org.uk/information-support/local-minds.aspx

https://www.versusarthritis.org/

https://www.nras.org.uk/emotions-relationships-and-sexuality

https://www.arthritiscare.org.uk/living-with-arthritis/emotional-wellbeing-and-arthritis

Regular blood tests sound drastic, but they are a simple way of avoiding future problems associated to your arthritis and connective tissue disease and medications prescribed to treat these conditions.

The main purpose is to pick up potential side effects from long term medication early, but they also assess disease activity such as inflammation.

The frequency of tests depends on the drug and how long it has been taken and the Rheumatology Team will let you know the frequency of the blood tests required

• Blood test for DMARDS require fortnightly for until you have been on a stable dose of the medication for 6 weeksthen  blood tests monthly for 3 months , then finally reducing to every 3 months,  as long as there have been no abnormal results requiring a change in medication
• Blood test for Hydroxychloroquine on its own requires pre appointment blood test only

• Blood tests for Biologic Therapies monthly for 3 months , then finally reducing to every 3 months,  as long as there have been no abnormal results requiring a change in medication

• Blood tests for Janus kinase (JAK) inhibitors require fortnightly for until you have been on a stable dose of the medication for 6 weeksthen  blood tests monthly for 3 months , then finally reducing to every 3 months,  as long as there have been no abnormal results requiring a change in medication

Whilst taking your medication, it is essential for your safety, to have regular blood tests. (The only exception is if you have been prescribed Hydroxychloroquine/Plaquenil on its own)

• Routine Blood tests prior to appointments

Some patients may be asked to have a blood test prior to appointments, in the case you should have these taken 3-5 days before your forth coming appointment.

Why might I best asked to repeat a blood test?

This is usually because your health care professional need to accurately interpret your test results. This is quite normal and can happen for a variety of reasons. So, it’s not an immediate cause for concern. You will receive a letter or a telephone/ Text Message requesting a further blood test is undertaken

It might be that your results are borderline, i.e. on the threshold of two different readings, or it could be that your results are abnormal.

Some times more tests are needed to get a full picture of your health in line with previous blood test results

Other reasons include:-

      Sample rejected

      Missing blood test sample bottles

      Underfilled sample bottled

Out of date sample bottle being used- some of the blood sample bottles have special chemicals within the bottle, if the sample out of date, the sample result may be affected

In correct information on blood test form or on the sample bottle i.e., full name, date of birth, hospital/NHs Number etc

Regardless, you must take a repeat test if requested. It will help your health care team better understand, treat any health problems you may have.

Is it recommended that  I get a blood test done if I am having a flare of my arthritis/ Connective Tissue Disease?

It would be recommended that if possible that you do get any updated blood test if you are having a flare of your arthritis/ connective tissue disease, as this may help when reviewing you and making a new management plan.

Where can I get more blood test forms?

The Department of Rheumatology will provide you with the first 3 months of blood tests forms, there after you can ask GP Practice team for further blood test forms

Will my GP receive copies of the Blood tests

Yes, most general blood test results will be ready within 24 hours of the blood test sample received, although some specialist blood tests may not be available for a few weeks. 

GP'S Practices using local pathology service and blood tests taken at the local hospitals will be uploaded to a IT system called Apex and are available to your GP Practice through two other IT Systems ICE and The Care and Health Information Exchange (CHIE) is a secure system which shares health and social care information from GP surgeries, hospitals, community and mental health, social services and others 

If your blood test samples are sent to Southampton, Winchester, Guilford, Basingstoke, Isle of wight or Chichester , your GP Practice will receive a copy of the blood test results, however the Department of Rheumatology may need to liaise with your GP surgery or the other hospital to access the results. 

How are my blood tests result monitored by Rheumatology?

At the Portsmouth Hospitals University NHS Trust- Department of Rheumatology, we have a specialized computer system for monitoring blood results, (DAWN). Once you have started a DMARD, Biologics, JAKs  medication your details will be entered onto the DAWN system and your blood results will then be monitored. 

The Rheumatology Department will also inform you and your GP practice of any abnormal blood results which may need us to make changes to your medication.

What happens if I miss a blood test?

If you miss a blood test, the computer will alert us.

The Department initially will send you a text message, followed by a letter to remind you to have a blood test. If you still do not have your blood tests done after the 1^st letter a second letter will be sent to you and the rheumatology advising you that we recommend that you stop your medication, and no further prescription will be issued either by the Rheumatology Department or your GP until you have had a blood test completed.

If you have received the second letter for your :-

DMARD treatment you will need to let your GP Practice know that you have had a blood test so that they can restart your prescriptions (remember this can take up to 2 weeks to action).

Biologics and JAKS treatment you will need to let the Rheumatology team know by emailing pho-tr.rheumatologypail@nhs.net  so that Rheumatology can restart your prescriptions and notify the Home Care Pharmacy team to restart Deliveries (remember this can take up to 2 weeks to action)

Where can I have my blood tests taken

Most of our patients have their blood taken at their family doctor's practice. Sometimes the family doctor arranges for the blood to be taken at the local hospital. All blood test results should still go back to the GP or you can have these at local blood test by booking an appointment.

What  blood tests are required?

In general, we require a full blood count CRP/ ESR (measure of inflammation)  (FBC), liver function tests, creatinine, and U&Es to monitor medication.

For more information about understanding Blood tests visit

https://nras.org.uk/resource/understanding-your-ra-blood-tests/

https://www.nhs.uk/conditions/blood-tests/

https://labtestsonline.org.uk

When diagnosed with Arthritis and Connective Tissues Disease you may find that you need to take at least one medication to manage the condition. Although it can become routine, some people may have problems remembering to take a dose, opening child-proof bottles etc.

Your pharmacist can help you better understand your medicines and solve any medication challenges

Medications prescribed by Rheumatology usually include:-

Pain Killers- Analgesia - is any member of the group of medication ( drugs)  used to achieve relief from pain 

Non Steroidal Anti Inflammatory Drugs-  Non-steroidal anti-inflammatory drugs (NSAIDs) are medicines that are widely used to relieve pain, reduce inflammation, and bring down a high temperature

Steroids also called corticosteroids, are anti-inflammatory medicines used to treat a range of conditions

Disease Modifying anti Rheumatic Drugs (DMARDS) - DMARDs help preserve joints by blocking inflammation. Without DMARDs, inflammation would slowly destroy your joint tissues over the years

DMARDS can be used as:-

DMARD Combination Therapies- Sometimes a single medication is all that’s needed to control inflammatory arthritis. But more commonly, two or more medications used together – combination therapy – is required to relieve symptoms and prevent long-term joint damage and disability.

To get the most out of your medicines and avoid unwanted side effects, you should ask your doctor or pharmacist about:

• different ways to treat your condition
• what will happen if you don’t take your medication
• what are the benefits of certain medications
• any side effects or risks
• how long you will need to take the medication for
• how you will know if it's working
• anything you should avoid while you’re using medication and afterwards
• anything you can do to help yourself.

Keep an updated list of all your medications, including prescription, over-the-counter and herbal medications.

These questions are especially helpful to ask before you start taking a medication. DMARD and Biologic/ JAKs Medication initiation and Review Clinics  When you are first prescribed a drug, a member of the Rheumatology Health care team will discuss your condition and medication options with you. This will help you make an informed decision about your health and treatment  The decision is yours and you don't have to agree to any treatment that you're not happy with.  The Clinical Nurse Specialist will also provide you with a follow up review clinic.

DMARDS- 6 to 8 weeks after starting your medication

Biologics and JAKs- 3-4 months after starting treatment

Suddenly stopping certain medicines can have side effects or worsen your Arthritis and Connective Tissue Disease. If you’re having problems with your Rheumatology medication, talk to the Rheumatology team email pho-tr.rheumatologypail@nhs.net  Telephone 02392286935

IMPORTANT Steroids- Do not stop taking your Steroids without talking to your doctor. If you've been taking steroid tablets for more than a weeks, you usually need to reduce your dose gradually. Stopping suddenly can cause your adrenal gland, which makes important hormones for the body, to stop working.For all medication prescribed by your GP please talk to your GP or pharmacist first before making any changes.

What other  Community Chemist/Pharmacy services are available that can help me with my medicines?

New Medicine Service- this is a free NHS service for people who are prescribed certain medicines for the first time.

Your pharmacist will support and talk to you one-to-one in the first few weeks of starting a new medication. It’s an opportunity for you to ask any questions and bring up any issues you’ve had when taking a new medicine.

Medicine Use Review (MUR)- This is a free NHS service for people who may have difficulties with managing multiple medications.

A pharmacist will talk to you one-to-one about all your prescribed medicines, as well as any over-the-counter medicines or supplements. It gives you a chance to tell your pharmacist about problems you may be having with your medicines and to ask questions.

Your pharmacist can give you tips about how to take your medicines the best way and help solve any problems you have.

You may get an MUR if you:

• are taking medications where the dose is critical
• have recently been discharged from hospital and changes were made to the medicines you were taking
• take medications to help your breathing
• are at risk of or been diagnosed with cardiovascular disease and take at least four medicines.

Other services provided by your Pharmacist

Your pharmacist might also offer other services that help with your medications, such as:

• a home delivery service which may help if you have difficulty shopping
• a health check service to help with your long-term health conditions and see if your medications are working well
• an online repeat prescription service where you can pick up medications without having to get a paper prescription from your GP first
• pre-packaging your medications in single use foil dispenser so that you know what you should be taking at different times of the day.

Check how you are storing your medication

Biologic Medication - must be kept in the refrigerator for storage is often much less painful upon injection when brought up to room temperature. Before injecting, remove one pre-filled syringe from the refrigerator and leave the syringe out for at least 30 minutes before using. Or alternatively, while still in the wrapper, hold the syringe in your armpit to bring it to body temperature more quickly.

Methotrexate- Nordimet, Methofill and Metoject injections do not need to be stored in the Fridge

Injections Sites- Choose a site that has a little extra fat. If your Abdomen (tummy) is very lean, try injecting into your thighs. If your thighs are small, try giving the injection into your stomach Abdomen (tummy).

Do not inject into skin that is irritated, visible small blood vessels reddened, bruised, infected, or scarred in any way

Rotating the Injection site- If you notice bruising or pain, rotate your injection site. One site may be easier than others, but rotating can help reduce any pain, tension, or frustration you may experience.

Make sure to clean the area with an alcohol pad afterward. If you still experience significant pain, you may be able to use a numbing cream.  

Cold skin can be hard and stiff. Inject after a warm shower/bath, when the skin is soft and supple. Or apply a warm compress to the injection site for five minutes before injecting. However, take caution in any area where sensation of temperature is impaired to avoid burning yourself.

Numb the area- If you are prone to bruising and pain, you can use ice or an ice pack to numb the injection site for several minutes prior to injecting yourself. Remember do not cause an “Ice Burn”- always place the ice/ ice pack in cloth

Numbing Cream- Some numbing creams are available over the counter, but make sure to check with your doctor before incorporating a numbing cream into your routine.

Prevent irritation by keeping injection site clean and dry- Wet alcohol on the skin can burn during injections. If you use an alcohol swab to clean the skin, let the alcohol dry before injection to avoid the sting. Then after the injection, quickly apply a cotton ball to prevent medication from potentially leaking and irritating the surrounding skin.

Relaxing- Try to relax a bit just before the injection by thinking of something pleasant that makes you happy, then massaging the injection site by before and after injecting by applying pressure with your fingers, which will help to "calm" the area... it's a great trick for getting rid of pain! Be aware that while you're massaging the injection site, there may be a few involuntary muscle spasms

Vibration- Buzzy Device- Buzzy is a vibrating device with ice pack wings that decreases sharp pain when placed upstream. It uses natural pain relief by confusing your body's own nerves, thereby dulling or eliminating sharp pain. In the same way that rubbing a bumped elbow helps stop the hurt or cool running water soothes a burn bypasses sharp pain. Remove the cool gel pad from the refrigerator and apply the Buzzy device 1-2 minutes before you are due to have your injection.

http://www.buzzy4shots.co.uk/Health_Care_Buzzy.html

Keep the goal in mind- If your daily injections get difficult or tiresome, think about why you are taking the medication.  Keeping your disease in control and preventing disability is the main purpose of your injection, keeping your goal in mind may help ease any fear or anxiety you may be experiencing. Remembering the reason can also help you keep any discomfort you may feel in perspective.

Know when to ask for help- If you can't inject yourself or are having a difficult time with certain injection sites, have someone else, like your partner, administer the injection for you. If that's not possible, talk to the Rheumatology Clinical Nurse Specialists to show you the best way to inject yourself can make a big difference.

Please do not hesitate to contact the Department of Rheumatology Patient advice and information line if you need further advice and support – Telephone 02392286935 or email pho-tr.rheumatologypail@nhs.net

Having any form of arthritis or connective tissue disease can have a negative effect on your mental health and wellbeing.

For some patients receiving an arthritis or connective tissue disease diagnosis can be a positive experience for people, following what could have been years of waiting to name the reason behind the pain, which they now can learn how to manage. However for others, it can take time to accept that they have a condition which cannot yet be cured, and their hopes and dreams may need to be adapted.

It is important to recognised that when you are living with arthritis or connective tissue disease symptoms such as of anxiety. low mood or depression can be experienced at any stage of the disease.

Because anxiety is often perceived as normal, people don’t always seek mental health services for it. Left untreated, anxiety can lead to greater problems. In fact, chronic anxiety can increase someone’s risk of developing depression.

Arthritis, anxiety, and depression can each have negative effects on overall health and quality of life. Feelings of sadness or worry can interfere with a person’s ability and motivation to care for themselves properly and manage daily life, let alone manage their arthritis or other health conditions. That’s why it’s important for people who have arthritis to take care of their mental health symptoms as well as their arthritis symptoms.