Living with Rheumatoid Arthritis – who should be in your RA team

Rheumatoid Arthritis is a systemic autoimmune disease, so you do you need in your RA team?  The disease itself varies greatly in severity from person to person – some people have mild, occasional flares and others are completely disabled by constant pain and joint deformation.  Treatments have improved and become more accessable and affordable over the years, and these days many people respond well to medication and live an almost normal life.

Some people, however, don’t respond well and still suffer significant disability, pain and fatigue.  For these patients particularly, managing the symptoms of the disease requires a muliti disciplinary team approach to provide the best possible care and quality of life.

Finding out you have a chronic illness is a life changing event, and with a misunderstood disease like Rheumatoid Arthritis, it can be a scary and worrying time.  At diagnosis, it’s hard to predict what the disease course will be, and as a newly diagnosed patient you ’don’t know what you don’t know’.   There’s a lot to take in, and many emotions to work through. It’s important to put together a support team to help you navigate this new world.  So who should be part of this team?

Your RA Team – Friends and Family

First and foremost, friends and family are essential to provide love and support.  It can be overwhelming taking in a lot of new information – medications, treatment plans, referrals…and possibly fear of what the future may hold. Having supportive friends and family can help you manage the many challenges associated with living with RA.

It can help to take a friend or family member as a support person to your Rheumatologist appointments, so that you have another pair of ears to remember things, and they can be well informed about your disease and prognosis. This support person can help you make decisions about your treatment plan, medication changes and perhaps help motivate you to make positive lifestyle changes, such as following an anti-inflammatory diet and taking appropriate exercise.  Most of all, friends and family can provide much needed emotional support to help you through the tough days and disease flares.

Many people say that you find out who your real friends are when you get diagnosed with RA (or any chronic illness).  The sad truth is that some relationships will fall by the wayside. The social isolation that comes with a disabling illness can be as devastating as the disease itself, so it’s important to make an effort to stay connected to the people in your life, and show your appreciation to those that do provide support and encouragement.

Your GP / PCP

Your GP will be the central point for co-ordinating your care.  It’s important to find someone who you can talk to and feel comfortable with, as you will be developing a long-term relationship with them.  They will need to get to know you and your health issues so it’s essential you find a GP whom you trust and can see regularly, and who is interested in being the central hub of your RA team.  They will get to know your history, and order regular lab work to monitor your disease progression and medication side effects.  They will write referrals to access other medical specialists and health services, as required and also offer symptomatic relief e.g. anti-inflammatory medications, pain medications and cortisone injections.

Your Rheumatologist

A rheumatologist is a specialist in rheumatic diseases, like RA, and arguably the most important member of your RA team.  They evaluate your disease severity, decide on the best treatment options and keep track of your progress and disease activity.   Again, its important to find someone you can communicate openly with, as your rheumatologist needs to understand how you are managing day to day, the severity of your symptoms and the impact RA is having on your life.  Your relationship with your rheumatologist is a long term one, and it needs to be a co-operative and honest, with both you and your rheumatologist being partners in your care.  Your rheumatologist’s role is to choose the medications most likely to help you, although there can be a lot of ‘trial and error’ in the beginning, while you try to find a medication or cocktail of medications that controls your disease.  It is a slow process, because the medications used to control RA are slow to take effect and you need to be patient, and trust in your rheumatologist’s clinical judgement.

If you have extra-articular (not confined to the joints) disease manifestations, your rheumatologist may also refer you to other health professionals to manage those symptoms and co-morbidities.

Other medical specialties

RA is a systemic disease, meaning it can affect the whole body.  Only about 30% of patients have truly systemic disease however, meaning their disease has affected other organ systems.

It’s not uncommon for RA to affect the lungs and therefore you may be referred to a pulmonologist.  The heart also can be affected so you may need to consult with a cardiologist.  Eye involvement is common, and a few of the medications used in RA treatment can affect the eyes, so many people regularly see an ophthalmologist.  Inflammatory arthritis has a close relationship with inflammatory bowel disease, therefore a gastroenterologist is a common member of the team.  Sometimes there are neurological symptoms, kidney involvement, and skin involvement.  Every case is unique and any or all of these specialties may play a role in your treatment at some point.

Psychological support

Depression and anxiety are very common co-morbidities of RA.  Being diagnosed with a chronic illness is a life changing event, and the ongoing pain and fatigue associated with the disease contribute to depression and anxiety.  Many people are no longer able to participate in activities they once loved, or they need to reduce their involvement in social events.  This can lead to social isolation and loneliness.  Having a good psychologist as part of the team is essential to help manage these emotions, teach you coping strategies and give you the tools you need to manage the challenges that life with RA brings.

Allied Health professionals

Again, depending on the severity of the disease, there are several Allied Health Professionals who can improve your quality of life and play and important role in your RA team.

Occupational Therapists can help you with assistive devices, home modifications and mobility aids. They can also teach you alternative ways of doing things to reduce pain and disability and improve function.

Physiotherapists can give you exercises to improve and maintain strength e.g. grip strength.  They can show you how to perform exercises properly to maintain your range of motion and improve your mobility and function.

An exercise physiologist can program appropriate exercises to maintain cardiovascular fitness and muscle strength without damaging or aggravating tender joints.  And exercise physiologist can show you how to perform exercises correctly, so as to strengthing your muscles and joints and prevent injury and exacerbation of inflamed joints.

Exercise is essential for everyone, but especially for people with RA.  Many people are afraid that exercise will make their disease worse, but studies show the opposite.  Function is improved, and pain and fatigue are reduced when regular, appropriate exercise is part of the treatment plan.  Exercise also helps you maintain a healthy body weight, essential with RA.  Being overweight significantly increases pressure on joints and reduces your chance of reaching remission.

A dietitian can help design a balanced diet, teach you about anti-inflammatory eating and help you maintain a healthy body weight.

Support Groups

Sometimes the only people who can understand what you’re going through are other people with RA.  Either online, or offline, RA support groups can provide valuable information and support from people who understand best.

A word of warning, there can be negative aspects to support groups.  No two cases of RA are the same, and it’s impossible to predict disease progression with any certainly.  Just because one person suffered a complication, or a medication side effect, does not mean that the same thing will happen to you.

You’ll often find people with more severe disease in online support groups, which can give a false perception of RA being more disabling than it is in the ‘real’ world.  People with milder disease, or who respond well to medication are out living mostly normal lives, not posting on support groups.

Some online forums can become competitive, and much misinformation is spread online.  Some people are prone to negativity and fear mongering.  It’s important to always refer to your rheumatologist when you have questions and concerns.  You go to support groups for support, not for medical advice.

Ultimately the most important member of your team is YOU. And your attitude will have the biggest influence on how you manage and navigate this new world.  Learning about your disease, being open to treatment options and taking an active role in managing your disease through lifestyle modification as well as medication and trusting in your medical team will give you the best chance for a happy, satisfying life with RA.