For many people a diagnosis of Rheumatoid Arthritis (RA) can take years to arrive at. I was fortunate in that it only took a few months following severe symptoms before my blood tests showed that I had positive Anti-CCP antibodies. These antibodies are only present at high levels in people with the more severe form of RA so my Specialists were able to comfortably make a quick positive diagnosis. It also meant that my Doctors were able to start me on disease modifying medication asap.
Rheumatoid arthritis is an autoimmune disease that causes pain and inflammation of the joints and because it is a systemic disease other parts of the body can also be affected. RA cannot be cured but the thinking is that treatment with a range of drugs, early on in the disease, can slow the progression and limit permanent joint deformity.
One of the main symptoms of RA is debilitating joint pain for the first few hours of the morning. When I say debilitating I really mean that. You simply can’t move your body and every effort to do so is like trying to push a bus up a hill. Many people describe it as being hit by a bus and that paints a very good picture. So, you are newly diagnosed and in a world of pain and think…yeah, drugs to make me better. Oh how naïve one can be, I certainly was. I was working full time at that stage and was so hopeful for a miracle cure. The medication will certainly slow the progression of the disease but once on the medication a whole new world of pain and disability arises. The drugs as I’ve said come from a family called “disease modifying drugs” (DMARD for short).For most of us the first drug your Specialist wants to prescribe is called Methotrexate. Ok you think, that’s great, give me the script and I’ll be on my way 🙂 You are then told this is a chemotherapy drug and granted you will be given a lower dose than what is given to cancer patients but once you take it you soon realise the side effects are just as challenging as RA itself. Each person with RA can have a range of side effects and for some they are mild and settle quickly but for others they leave them questioning whether in fact taking any medication is worth it. It is a dilemma for the patient and frustrating for the Dr who has little else to offer in terms of managing this disease.
Over the years many people with RA find that their bodies adjust to the various medications they’ve been given and the drug stops working and RA flares become more frequent and debilitating. When that happens another drug is added to replace the first one or just to join it. In my case I had to stop Methotrexate when I contracted C diff infection as the Infectious Disease Specialist treating me, felt that Methotrexate was a key contributor to me contracting this dangerous super bug. That left my Specialists in a quandary of how to treat my RA effectively. So we are still trying to find a medicinal mix that works for me. At the moment my drug list is way too long but in the most part I would probably categorise my RA as “just manageable” with a few too many bad days. My main DMARD is Arava, along with Plaquenil and Prednisone. I also take Lyrica after being diagnosed with Trigeminal Neuralgia 12 months ago. (That’s a whole new topic that deserves its own post later) So it’s a complex situation for the RA patient and their medical team in managing disease v’s medication side effects.
I certainly don’t have any great answers but I do believe that early acceptance of the disease and its complexities is the first step needed to begin to manage it rather than it managing you. Joining a good support group is a great starting point. There are many Arthritis Foundations across Australia and around the world who can provide that support. I’m a member of an online support group called “Swell Gals” hosted by Arthritis Australia QLD and just sharing experiences with others when I was first diagnosed and then being there for others newly diagnosed in later years, has been inspiring, uplifting and rewarding.