DESPERATE TO STOP THE PROGRESSION OF JOINT DAMAGE, WHAT ARE MY CHANCES, AND HOW?
I AM AT THE AGE, WHERE i AM MY PARENTS.BOTH MY PARENTS HAD ARTHRITIS.
I AM IN PAIN, AND MY FINGERS, TOES, AND JOINTS ARE BECOMING BENT, JUST LIKE MY MOTHER. OFTEN, A SINGLE MOVE CAN TRIGGER UNBEARABLE PAIN. I HAVE ENOUGH CONCERNS, AND DO NOT WISH TO TRY OUT A MEDICINE THAT COULD PRODUCE MORE PROBLEMS.
HELP.
Firstly you are fighting a loosing battle with RA, whether you abstain from medication or not.The emphasis is on improving your quality of life and to subsequently sustain such a level that the medication may provide.
The prolong ingestion of medication to achieve this result differs from person to person.You will never know the nature of the effect medication will have on your system unless you have used it.
The choice remains yours whether you intend managing your illness or not.
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I understand your fear, having grown up with parents who had the disease and knowing what it did to them. However, RA isn't the disease it was when your parents got it, it's not even the disease it was 10 years ago. The medications available now, such as the Biologics like Enbrel and Humira, have made the prognosis of this disease a completely different animal, enabling people to get back to living a relatively normal life.
That said, it is essential that you get treatment as soon as possible. Without it, your disease will progress and place increasing limits on your ability to live your life the way you want to. As you mentioned, there are side effects from medications and the bigger the medication, with potentially bigger side effects. However, you have to weigh the costs with the benefits - when I was first considering starting Enbrel and last year when I had to switch to Humira, the potential side effects concerned me. With Humira, one of those side effects is an increased risk of cancer. But I took a look at my life without the medication and decided that it wasn't a life. I had a really big problem and big problems need big solutions. Solving a big problem like that, getting my life back, was worth it. And I have never regretted it. The damage that had already been done to my joints can't be reversed, but the progression of the disease was stopped, my pain levels are significantly reduced and I am able to focus on what's really important: living my life, being with my family and friends, work, laughing. These medications were a miracle to me. That's a strong word, but there's really no other way to describe it. I got a second chance to live my life and it's so big a miracle, it still makes me cry with joy 3 years after it happened. Yes, I have side effects, but once you learn how, managing them becomes second nature - a couple of months ago, I wrote a post with some tips on how to manage side effects and you can read that here.
As things stand right now, we who have RA will likely need to be on medication for the rest of our lives - Dr. Mark Borigini writes more about that in his latest post (click here). But like me, you have to ask yourself what kind of life you want and how you want to spend it. You have a choice.
I urge you to see a rheumatologist to discuss your options. Your parents' disease is not your disease. You don't have to live like this.
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Ellen
Thursday, October 01, 2009 at 02:47 PM
Your Ideal Rheumatologist
Establish a relationship with your doctor that works for you.
I am in total agreement with Lene's answer. In addition, you can try 'alternative' measures that may help with quality of life, like meditation, green tea (or black tea if you don't like green tea), turmeric and such, fish oil, vegetarian food. Research is showing potential of EGCG in tea that works against inflammation. But this will be miniscule compared to what the biologic medicine can do. Even the biologics may not prevent all joint damage for everyone, and - as Lene says - will not undo what has been done. I had joint damage in my wrist in a matter of weeks, before I had the definitive diagnosis. Please don't wait! I have now been on Enbrel for 4 1/2 years, and though there has been a slow continuation of the wrist damage I had, it has not spread much to the rest of my body. The biologics also help with fatigue and state of mind. That may sound weird but it's true - one indicator to me of when I'm due for my meds is, my mood goes downhill (I think it's the undercurrent of pain increasing before I'm really aware of it consciously). The absence of pain can actually be a little disorienting at first if you've been in pain for a long time. But don't let that stop you - it is REAL.