When I was first diagnosed with Rheumatoid Arthritis, I really had no idea of the long term affects of this disease. In the beginning, I was overwhelmed with the pain and changes in my body. All I could think about each day was the doctors’ visits and the endless amounts of medication. I didn’t know anyone else who had RA who I could ask questions. I felt alone and scared. When I read through the message boards on the RA Central website, I feel the frustration of those who have been recently diagnosed. I know the fear of having so many unanswered questions. Now, 10 years into my RA journey, I still have questions but I have a lot more answers
My RA came on fast and furious. I was a pretty healthy person until this disease came along. RA swept me off my feet and I am still running! I’m sure that’s how most of you who have been recently diagnosed feel. Well, let me tell you from experience, it’s a race worth running right from the start. The sooner you are diagnosed, get educated and start treatment, the better the outcome 10 years down the road. I made a lot of mistakes in the beginning by just taking my doctors advice and not really researching all of my options.
My first and probably hardest lesson learned was the decision to start taking prednisone. I never had a clue what this miracle drug would do to me years later. I was put on such a high dose of prednisone, which did help with my pain, but caused me to gain 50 lbs within months of taking it. I had “moon face”, thinning of the skin, bruises, hot flashes and mood swings, just to name a few. Prednisone can actually deplete your bone density when taken long term, which people with arthritis certainly don’t need. I developed terrible stretch marks on my legs, thighs and lower back due to weight gain and loss of elasticity due to prednisone. These were side effects that I never knew about until it was too late. The thing with prednisone is that it does help. That is the irony of it all. During my worst flares the only thing that would get me through was prednisone. It was like choosing evil over pain. That’s how desperate I would become. There is a definite need to take prednisone when you have rheumatoid arthritis. I just know that had I been informed about the terrible long term side effects of this drug, I would never have taken it so lightly. So for all of you getting ready to ride the prednisone train, please stop and find out everything you can before boarding. The same goes for all recommended medications and treatments. Ask questions. Be informed. Since RA is a chronic disease, that means you will be dealing with it in one form or another for the rest of your life.
This forum for RA sufferers is so important. I am proud to be a part of it and I hope that my experience with this disease and my story can help others. I have literally experienced every thought, emotion and fear that you are all going through. I have tried and failed many of the medications that you will be trying. I have dealt with the pain and frustration of having so many questions and no where to turn. I have had 10 years of learning how to live life with rheumatoid arthritis, and I am living a full life regardless of this disease. I spend hours researching and learning about new advances in arthritis treatment and diagnosis. I read everything I can about alternative treatments and natural remedies. The best advice I can give to anyone who has been diagnosed with RA is to get your hands on every piece of information you can. Ask your doctors about the long term effects of the arthritis itself as well as the medications you use to treat it. It’s a difficult balance to take one day at a time but also be aware of the future damage that can occur. Take it from someone who learned the hard way. You will be much better off preparing for the long term as well as dealing with what happens today.