One thing that I never thought I would be or even aspire to be is a “patient expert”. Since being diagnosed with RA at 27 years old, that is exactly what I have become. I encourage everyone with arthritis to get involved in your treatment. Ask questions. Then ask even more questions. Since arthritis is a life-long battle you need to be informed on everything possible. It is so important to have open communication with your doctor, therapist or holistic practitioner. With all of the new medications available for RA, it is crucial to be informed.
I recently have been struggling with weaning off of an anti-depressant medication called Effexor. This was prescribed to me by my rheumatologist a couple of years after my diagnosis. In addition to treating depression (which wasn’t really my problem at the time) it was also supposed to help with pain. I was in a tremendous amount of pain and was ready to try anything. It is now 7 years later and I have learned that getting off of this particular drug is horrible. The withdrawal symptoms are severe dizziness, nausea, headaches, sweating, foggy brain, etc…I had no idea of how difficult this would be. My doctors are all aware that I am on this medication and they have never had any discussions with me about it’s side effects. Most doctors don’t even realize how the body reacts when you stop taking it. Even after missing just one dose, I feel absolutely horrible. I have always considered myself a pretty tough cookie but this is awful. There are a lot of medications that can have severe effects on your body when taken over a long period of time. Shame on me for not asking more questions, and shame on my doctors for continually prescribing a medication for me with no thought to how it would affect me in the long term.
Since I am an information junkie, I read everything I can about new medications. Orencia is one that I have been considering. What scares me the most is that since these drugs are so new there is not a lot of research on their long-term effects on the body. That is why I have become a patient expert. I want to know what I am putting into my body. I want to know how medications affect pregnancy. I want to know how will my body react if for some reason I need to stop taking a certain drug. I want to know everything I can. It is also so important to make sure if you are seeing multiple doctors that you tell them everything you are taking or doing (acupuncture, herbs, etc.) I know when I was younger I used to be afraid to speak out. But now I know that the quality of my life literally depends on it. I will never again take a drug upon my doctors’ recommendation without doing my own research.
Internet blogs are a great way to communicate with others and get their experience first hand. It also makes you feel better to know that other people are experiencing the same things that you are. No matter what, you need to be informed. Ask questions. Get second and third opinions. The only person who can truly speak for you is yourself. If your doctor won’t listen or dismisses your concerns, find another doctor! I had a rheumatologist that actually fired me as his patient. Yes, I said fired me! He didn’t like the fact that I had my own thoughts and ideas. He argued with me anytime I questioned his recommendations. He was angry that I went to another rheumatologist for a second opinion, so he fired me. This is not the kind of doctor you want treating you for the rest of your life. I now have a terrific doctor who I trust and most importantly he trusts me! We work as a team and he gives me the time and space that I need to make informed decisions. Finally, I have a “partner” in my decision making process and not a doctor with an ego to feed. Becoming a patient expert has allowed me to grow and discover that I have a lot to consider. The decisions that I make now are informed, well thought out and the best for me, not someone else.
Published On: October 20, 2006