Australians living with rheumatoid arthritis (RA) are being encouraged to openly discuss their overall health, emotional well-being and treatment challenges with their doctor to improve their quality of life.
New research shows more than half of people living with RA feel their lives are controlled by their condition. However, only 56% of patients discuss the impact RA has on their lives with their specialist. RA, which affects more than 420,000 Australians, can have a debilitating impact on a person's physical health and can be compounded by mental health conditions, including anxiety and depression.
A new online resource is being launched today to help support Australians living with this chronic health condition find the information they need to improve their overall health. Healthshare's Rheumatoid Arthritis Topic Page will allow those affected by RA to engage directly with specialists online, in a non-confronting environment.
Healthshare aims to provide a way for those affected by a health problem, including family, friends and carers, to ask questions of qualified healthcare professionals that will help build their knowledge and, as a result, assist them in gaining more control over their condition.
'A visiting patient equipped with an understanding of their condition and treatment options can really improve the quality of a consultation," said rheumatologist Dr Irwin Lim, who is part of the panel of experts taking part in Healthshare.
'This new, online resource will assist those living with rheumatoid arthritis to improve their knowledge, regardless of their location, so they can make the best possible use of the time they have with their specialist. There are a number of treatment options available to those living with this condition; however an open dialogue between a specialist and their patient is important for the treatment and management of their arthritis."
It is free to ask a question and receive an answer from a registered healthcare professional through Healthshare on the Rheumatoid Arthritis Topic Page. For more information or to view the site log on to: www.healthshare.com.au/community/health_challenges/rheumatoid-arthritis
Question: Can you talk us through your diagnoses with Rheumatoid Arthritis?
Sally Carkeet: I was diagnosed about twenty years ago now. I was lucky because I am a nurse and I knew I wasn't well, I went to the GP where I had blood tests and it became evident that I had to see a Rheumatologist. Going to the Rheumatologist early was a really important thing.
Question: Has your condition worsened since the initial diagnoses?
Sally Carkeet: It did worsen for about three years, until we got it under control and in remission.
Question: Can you talk us through some of the treatment challenges you've experienced?
Sally Carkeet: At the time, there was a variety of medications on the market and it was about finding one that worked, for me. A medication may work for six months or so but then it stops working for whatever reason and nobody really knows why. It could be that there are extra stresses in life or food issues or it could be a variety of things that can bring a patient out of remission.
The big problem with Rheumatoid Arthritis is the tiredness that goes with it and you have absolutely no control over it; not only is your body sore, it tends to be physically and emotionally tiring. Rheumatoid Arthritis can be overwhelming sometimes with the points all lining up together! We tried a few combinations of drugs which may have work very nicely for a period of twelve or eighteen months but eventually what happened is I'd go back to feeling lousy and be in constant pain which means I can't do things and I'd have sore, swollen joints.
Although I'm not allowed to talk about the drug that I'm on, at the moment; I remember walking into my Rheumatologist and saying 'I really can't take any more of this, I want to be a crash-test-dummy for something as there has to be something we can do because I can't be like this anymore!" Thankfully at that time I was able to trial a new drug and I've been on that drug for twelve years including the trial period. I was very lucky to find the drug that worked for me.
For most people with Arthritis there are so many different types of treatment not only medical treatments but naturopath and the introduction of methods such as exercise in heated water, diet with not having tomatoes and other research. There are so many new avenues that you can take as someone with Arthritis now especially if you are diagnosed early by a Rheumatologist as they will have all the right tools with so many different avenues to trial.
Question: How are you affected by Rheumatoid Arthritis, every day?
Sally Carkeet: As a Registered Nurse I was in charge of a number of the wards and I used to work 7am-3:30pm every day and I would have to wake up at 4am and my hands and feet wouldn't work so with my husband's help I would have to shower and put my hands and feet in water to try and get them to mobilise and start working. My husband would have to help dress me for work and I don't know how I used to get out the door and get to work, thank goodness I could still drive. I was very unsteady on my toes and I would come good about morning tea time and then the tiredness would set in and I'd be physically exhausted. I found going to the bathroom was very hard work because unless you had elastic pants it could be a real battle to navigate things like that; I also did not buy lace-up shoes because I just couldn't do them up. When I would get myself home in the afternoon, I'd try to make an effort to cook tea and sometimes I could and sometimes I couldn't; sometimes I was so tired, I'd have to go to bed at 5pm in the afternoon to have a sleep before I could get dinner ready.
Nowadays I have no problems whatsoever. I have found the right treatment although if I've had a particularly rough time at work I am tired but I don't think it's a Rheumatoid Arthritis tired but tired because I've pushed myself, like an ordinary person, I don't think I can blame it on Rheumatoid Arthritis.
Question: Do you believe resources like the Healthshare's Rheumatoid Arthritis Topic Page have helped you learn more about Rheumatoid Arthritis and the options available for you? If so, what have you learnt?
Sally Carkeet: The Healthshare's Rheumatoid Arthritis Topic Page is very interesting! Having used and looked at the Healthshare's Rheumatoid Arthritis Topic Page, I think it is very helpful for anyone who has been newly diagnosed, particularly with Arthritis. There are so many people that you can contact via the Healthshare's Rheumatoid Arthritis Topic Page including a Rheumatologist, nurse or someone like me who has Rheumatoid Arthritis and they can talk through the issues they're having including the special tools we use to open up doors or any other tips to make life easier for someone with Rheumatoid Arthritis.
It's a wonderful idea to have a forum that works simply and where there is access to professionals and everyone comes together at a central point without anyone harassing you or wanting to sell you something. The Healthshare's Rheumatoid Arthritis Topic Page enables you to ask a question and you receive an answer, fast.
Question: Why do you think the Healthshare's Rheumatoid Arthritis Topic Page is one of the better methods of communication?
Sally Carkeet: I am a Registered Nurse and have been for 40 years, when I was diagnosed with Rheumatoid Arthritis, I nearly died, I didn't know a lot about Rheumatoid Arthritis! Although nurses have an understand of many different subjects, it's only when something affects you directly that you get involved and study it and I did this before the internet – I would go to the library, find the resources and talk to other people.
Most families have the internet or have access to the internet and the Healthshare's Rheumatoid Arthritis Topic Page enables you to ask questions about your fears without having to wait for another appointment, it can all be done, very quickly!
I think people are becoming far more involved with their treatments to what they used to 10 or 20 years ago. I went through a stage of having to put up with drugs that weren't working because you do have to go through the process of what works for you, because what works for me, may not work for another person. It's a matter of finding the right combination and as more research becomes available a central spot like Healthshare's Rheumatoid Arthritis Topic Page keeps the professionals informed as well as those with Rheumatoid Arthritis and their families; all the information is there, at your fingertips.
People can use the Healthshare's Rheumatoid Arthritis Topic Page to ask about other people's experiences with treatments such as hydrotherapy and patients can use this site to gain knowledge.
Question: What else is great about the Healthshare's Rheumatoid Arthritis Topic Page?
Sally Carkeet: Many people in the future will benefit from the Healthshare's Rheumatoid Arthritis Topic Page, it's a shame it wasn't around 15 years ago! The support from family is absolutely vital and the Healthshare website aids them to understand Rheumatoid Arthritis further especially because patients with Rheumatoid Arthritis don't look as if they're sick as there is no bandage evident so people often don't think there is anything wrong.
Question: What advice would you give someone who had recently been diagnosed with Rheumatoid Arthritis?
Sally Carkeet: I have two pieces of advice; firstly I'd make sure they had early involvement with their Rheumatologist because they're the specialist in the area and they are brilliant! Secondly, I suggest researching Rheumatoid Arthritis to find out how simply things may make your life easier.
Interview by Brooke Hunter