"Communicating effectively with your rheumatologist will allow you to share information and work together to make the best decisions about your health. This will result in the best possible care for you. It is important to know the right questions to ask your rheumatologist.

"It is also really important that your rheumatologist, for example, knows about the things that are worrying you, such as the level of pain you are experiencing, where the pain is and whether the pain is getting worse. Discuss your medication and treatment with your rheumatologist, for example, are you experiencing side effects or is the medication working?

"This booklet, along with Arthritis Ireland's website and helpline, help you to fully prepare for your appointment." Prof. Geraldine McCarthy, Consultant Rheumatologist. You can read this entire booklet below or click here to download a copy.

Contents

• During the Consultation What do patients learn from their consultation?
• Before the Appointment Get the most from your appointment
• During the Appointment Steps to getting the most from your appointment
  
• After the Appointment
• Remember to take P.A.R.T. Take P.A.R.T. in your consultation
• Family, Friends and Colleagues
• Glossary of Medical Terms
  
• Drugs Used in Treatment

 
An Introduction by Prof. Geraldine McCarthy,
Consultant Rheumatologist

DURING THE CONSULTATION
The Statistics
What do patients learn from their consultation?

Access to rheumatologists in Ireland is limited compared to other countries in Europe. A patient can wait a long time before their first appointment. A survey was conducted by Arthritis Ireland to learn more about patient’s experiences during the consultation and also to see if areas can be improved. Below are some of the results that have been obtained from the survey:

● around 27% of patients surveyed felt that their condition could be explained better
● 33% felt that information on their treatment could be better
● in almost 40% of cases, no printed information was passed on to them or the printed information was poor
● almost half of the patients surveyed occasionally or never prepared for their first visit
● during the visit 33% of patients sometimes or never asked questions and almost 80% occasionally or never took notes
● in more than 81% of cases patients occasionally or never took somebody with them to the consultation, yet in around 38% of cases someone else’s presence would have been appreciated or helpful
● two out of three people did not take a leaflet away from the consultation explaining their disease. Yet around 67% would find a leaflet useful.

The survey was conducted amongst a representative sample of people who are members of Arthritis Ireland.

BEFORE THE APPOINTMENT
Get the most from your appointment
Planning before you see your doctor:

1. Be prepared. Before your appointment, write down your questions, items to discuss, and any changes in your condition. If you are organised you can make the best use of your time and your rheumatologist’s expertise.

2. Be confident. Don’t be afraid to ask questions. This will help you understand what is going on. If something is confusing then repeat it back to the doctor and ask him/her to explain more clearly. Seeing your x-rays or using diagrams can often help. If there is something you want to know then ask!

3. Bringing a family member or a friend can be very helpful. It will help you relax and also remember to ask the right questions. Moral support is always nice as is having someone to help you get around.

4. Think of ways to describe your pain and symptoms. You may be asked: Where are your symptoms? How much does it hurt? When did the stiffness start? Have things changed over time?

5. Make sure you have a list of things that have happened since your last visit. You may be asked: How are you feeling? Are you taking your medicine? How are things at home or at work? Make a note of the answers to such questions before you go to the appointment.

6. We have provided a ‘pain scale’ diagram on page 7 and some pages to make notes at the back of this booklet, which we encourage you to use to help discuss your symptoms, treatments and other matters relating to your arthritis with your doctor.

DURING THE APPOINTMENT
Steps to getting the most from your appointment

1. Take notes. Write down any important information or instructions. It is well known that up to half of what is said in the doctor’s consulting room is forgotten. Keeping your own records will help you become more informed.

2. Prioritise. On many occasions things brought up during the last five minutes of an appointment are very important and can make a real difference. So introduce important topics as soon as possible in your conversation.

3. It is important your doctor knows the whole story. Make sure that you tell your doctor of any medication or treatment you are taking on your own, including the full extent of your pain and worries. Don’t be embarrassed to share details.

4.  Make sure you tell your doctor of any complementary treatments you are using, such as herbal medicine, acupuncture or massage therapy.

5. Share information and decisions. Let the doctor know if there are any problems with following their recommendations, such as financial concerns, conflicts with sleep, eating habits or daily schedule with work or study.

6. Repeat key points. Repeating things will also help your doctor to clarify anything that has been confusing and will help you remember what has been discussed.

‘I ask the doctor a lot of questions about my arthritis and medications. It takes a little time but I find it benefits me’

AFTER THE APPOINTMENT
Steps to getting the most from your appointment

1. Follow up if you need to. If you forgot to ask a question during your appointment, call the clinic to get an answer. You may not be able to speak with your doctor immediately however, you can leave a message for someone to call you back.

2. Remember there is no perfect treatment for everyone. It is important to understand that there is no single treatment that is best for everyone with arthritis. Try and keep an open mind on treatment options when working with your doctor.

REMEMBER TO TAKE P.A.R.T
Take P.A.R.T. in your consultation

P. Prepare a list of questions, concerns and symptoms to discuss with your doctor

A. Ask questions during your appointment so you understand your treatment plan

R. Repeat what your doctor recommends so you can be sure you understand
 
T. Take action to reduce any obstacles you may have in following your treatment plan.

FAMILY, FRIENDS AND COLLEAGUES
Many changes occur in the life of someone who must live with a chronic condition such as arthritis. It not only affects the person who has the disease, but also significantly impacts the people around them.

Marriage
Living with chronic arthritis can have a major impact on a marriage. As the arthritis develops, some activities may need to be curtailed. Social life is one thing that can be affected, the healthy spouse can become frustrated because their social life is impacted too.

Responsibilities may need to be transferred to another family member who can better handle it. This can create a stressful situation for both the person who must undertake more responsibility and the person who must admit to themselves that they have become more dependent.

Financial responsibility is another area which may require modification if the patient has been the main breadwinner in the family. In order to overcome these issues patience is required and the willingness to openly communicate fears, concerns, and anxieties. An understanding between partners must be achieved in order to continue working as a team.

Children
It is very important that parents talk to their children about the disease. When a parent has chronic arthritis and the children are still very young, the child will likely grow up approaching the disease the way they observe their parent approaching it. If the child observes acceptance, they will feel acceptance themselves. If they see you coping they are likely to adopt coping strategies themselves, however if they see or hear constant complaining then the child is likely to imitate this behaviour. It is difficult to accept as a parent you cannot do as much with your child, especially in the physical sense.

Focus on things that can be done together. Quantity of time spent together becomes secondary to quality time. Young children are unlikely to ask many questions about arthritis, be open to addressing their fears. Make it known to them that arthritis is not a fatal disease, and convey to them the feeling that everything is under control. Allow them to feel secure. Adolescents are able to read, learn, and understand more complex information. They are likely to have more questions about the disease and about the resulting family situation. Address all questions which adolescents might pose realising their need to understand the situation.

‘Discussing how my arthritis affects our family has improved my relationship with them, we talk openly and regularly together’

Work and Colleagues
Arthritis can have a big impact on a person’s ability to work. People with arthritis may need to adapt their work situation to their disease. The severity of the arthritis coupled with employer support are key factors. You can compensate for much of the difficulty caused by arthritis if the relationship with your employer is communicative, respectful and honest. A relationship with an employer which is antagonistic or difficult is unlikely to produce cooperative results. Communicating your arthritis to work colleagues can also help create a good working environment. In order to continue working, it is important to continue the course of treatment you are on to keep the arthritis as well-managed as possible.

Younger People with Arthritis
Young people get arthritis too! This can be a shock to extended family and friends. Parents can sometimes feel guilty, confused and fearful. Brothers and sisters of young people with arthritis often feel overshadowed by their sibling’s condition, and the amount of their family’s time it takes up. This can lead to bickering, arguments and jealousy. Communication is key to overcoming these issues. Young people are particularly interested in long-term outcomes, future relationships and even pregnancy. Internet forums, discussion groups and help lines can sometimes help in understanding these issues.

For more information on relationships and arthritis, read Arthritis Ireland’s booklet ‘Coping with Emotions’, call the Arthritis Ireland Helpline on LoCall 1890 252 846 between 10am and 4pm Monday-Friday or visit www.arthritisireland.ie.

 
GLOSSARY OF MEDICAL TERMS

Acute
Describing a disease of sudden onset

Arthritis
When there is joint pain, stiffness and swelling

Autoimmune
A situation when the body’s own immune response system departs from normal operation and attacks components of the body itself

Bursitis
Inflammation of the protective ‘cushions’ between joints

Chronic
Describing a long term condition

Connective Tissue
Tissue that supports or binds other body parts and tissue

Contracture
Thickening and shortening of muscle or connective tissue causing a joint to deform

Deformity
Abnormal shape of joint or misalignment of two bones forming a joint

Fibromyalgia
Fibromyalgia is a syndrome predominately characterised by muscular pains and fatigue

Gout
Gout is an arthritic condition with elevated levels of uric acid in the blood stream leading to recurrent episodes of joint inflammation

Immune system
Protects us against infections and foreign substances. Our immune system seeks and destroys invading microbes

Inflammation
The way in which the body reacts to infection, irritation or injury through redness, warmth, swelling and pain

Psoriatic Arthritis
A form of arthritis associated with the skin disease psoriasis

Rheumatoid Factor
A blood test which may be positive with rheumatoid arthritis, can be present in the absence of any illness

Osteoarthritis
The ‘wear and tear’ form of arthritis and is uncommon before the age of 40

Rheumatoid Arthritis
A severe inflammatory form of arthritis

Synovitis
Inflammation of the membrane which lubricates joints

Systemic Lupus Erythematosus (SLE)
A chronic inflammatory condition caused by an autoimmune disease

DRUGS USED IN TREATMENT

Drug class
Non-steroidal anti-inflammatory drugs (NSAIDs)

Example:
Acetylsalicylate (Aspirin), naproxen, ibuprofen, and etodolac.

How they work:
Reduce tissue inflammation, pain and swelling.

Side effects:
Stomach upset, abdominal pain, ulcers, diarrhoea and even gastrointestinal bleeding.

Drug class
Corticosteroids

Example:
Prednisolone, methylprednisolone, dexamethasone.

How they work:
Orally or injected directly into tissues and joints. Particularly useful for short periods during severe flares of disease. They suppress the activity of the immune system.

Side effects:
Weight gain, facial puffiness, thinning of the skin and bone, easy bruising, cataracts, risk of infection, muscle wasting, and damage to bones of large joints, such as the hips.

Drug class
Disease-modifying anti-rheumatic drugs or DMARDs

Example:
Hydroxychloroquine/chloroquine, sulfasalazine, methotrexate, gold therapy, d-penicillamine, leflunomide.

How they work:
DMARDs have an effect on altering the progression of inflammatory arthritis and can promote healing.

Side effects:
Upset stomach, skin rashes, muscle weakness, and vision changes. Kidney damage with leakage of protein in the urine, and bone marrow damage with anaemia. Fever, chills, mouth ulcers, liver disease, diarrhoea. Tendency to infection and/or bleeding.

Drug class
Immunosuppressive medicines

Example:
Cyclosporin, azathioprine, methotrexate

How they work:
Immunosuppressive medicines suppress the activity of the body’s immune system.

Side effects:
Depress bone marrow function. Can increase the risk of infections, can lead to liver and kidney disorder and allergic reaction.

Drug class
Biological Medications

Example:
Abatacept, adalimumab, etanercept, infliximab, rituximab, tocilizumab.

How they work:
Stop the inflammation process. Symptoms can be significantly, and often rapidly, improved in patients using these drugs.

Side effects:
Mild skin reaction at the site of the injection. Itchiness, redness and minor swelling. Headaches during intravenous infusion, and there may be an increased susceptibility to infection including TB.

Drug class
Dietary supplements

Example:
Gamma-linolenic acid (GLA), fish oil, glucosamine and chondroitin.

How they work:
GLA is an omega-6 fatty acid that is found in the oils of some plant seeds, including evening primrose. GLA can be used by the body to make substances that reduce inflammation. Fish oil contains high amounts of two omega-3 fatty acids. As with GLA, the body can use omega-3s to make substances that reduce inflammation.

Glucosamine and chondroitin are popular dietary supplements for arthritis.

Side effects:
Increased risk of bleeding or affect the time it takes blood to clot. Belching, stomach disturbances, and nausea.

For further information on how Arthritis Ireland can help you live your best possible quality of life, contact us on LoCall 1890 252846 or log onto our website at www.arthritisireland.ie.