Wednesday, June 29, 2011

Treatment to Keep Arthur Subdued

Those of us with RA sometimes like to refer to our disease as "Arthur"...get it? Arthritis sounds like Arthur? :D Okay, so it's not exactly laugh-out-loud funny, but a little sarcasm never hurt anyone. What do you expect from a group of people living with a chronic and painful disease? We need humor. If we don't laugh, we might cry. I think we can all agree that laughter beats tears anytime. So, we personify our disease and refer to it as if it's a living and breathing entity all its own. RA can certainly feel this way at times, because it's always with us. There are a lot of different treatment options, but Arthur doesn't always respond to them or may only respond for a limited time. He's always hanging around, impacting our daily lives to a greater or lesser degree, being kept at bay with medication or raging through our bodies unchecked.

Arthur is a sneaky little devil. He can be subdued for a long time, and just when you start to forget about him "he taps on your shoulder (or any other joint or organ for that matter) and says, 'Hey, I'm still here!' Let's just say it's a little annoying!" (quoted from a friend of mine). Arthur also does the majority of his damage on the inside of us, making ours an Invisible Disease. In other words, it's usually not immediately obvious from looking at us that we have RA. Unless we have massively swollen joints, you might not notice anything unusual about us. You can't see the disease eating away at our joints, or inflaming our lungs to make breathing harder, or inflaming our heart and upping our chance of a heart attack. You can't see the fatigue, the low-grade fever, the full medicine cabinet that allows us to function. It's often invisible but no less real. There is one excellent blog that focuses on this, www.butyoudontlooksick.com. Written by a woman with lupus (similar to RA in a lot of ways), the blog describes what life is like when you don't look as sick as you truly are.       

Treatment for Arthur is complicated because there are a lot of factors in play. How effective is the treatment? How costly is it? What are the potential side effects? How does the treatment help with both the short-term and long-term consequences of RA? These must all be considered, there are no easy answers, and RA patients must make decisions about treatment for themselves because it is very personal. What works for one person with RA doesn't work for another. What works at one time for one person with RA doesn't work later on, because drugs lose their effectiveness or our bodies build up a resistance to them. For some, the benefits of a drug outweigh the risks. For others, the high financial cost of a drug may make it an impossibility. Of course, there is a lesson here - when making decisions that impact our health, it's good to be a little selfish. We have to live in our bodies and we have to feel confident about the medications and treatments that we choose. Your neighbor who tells you that a mango drink twice a day will cure you? Pay her no mind. You cousin who thinks it's all in your head and can't understand why you take such expensive and dangerous medication? She doesn't have a disease attacking her body from the inside out, so it's very easy for her to roll her eyes. Even your doctors don't fully understand what you're going through. Some do more than others, of course, and they usually mean well. But don't let them pressure you into the newest drug that promises a miracle - it's your life. 

There are the day-to-day struggles to be faced; extreme fatigue and pain are chief among them. Even for those like me who live a relatively normal life with RA, the fatigue is something we constantly battle. There isn't much to do other than take it easy, get plenty of sleep at night, and rely on caffeine. I need at least 9 hours of sleep at night to really wake up feeling refreshed the next day. Some people with RA need even more rest, especially if they're having a flare (that's the term for when RA is really active - it could be a few weeks at a time, a couple months, or for the ones who really hit the jackpot it could be that they live everyday in a flare, never seeming to find treatment that works for them). 

Then there is the pain that most people with RA live with, which is usually lessened by medication. Drugs like NSAIDs (pronounced "n-sad") taken at a high dosage can really help. Naproxen is one such NSAID that many of us take; I take 500 milligram tablets once a day. You might recognize Naproxen as the main ingredient of Aleve, except that in Aleve it is only available in 200 mg tablets. Let's look at that name for a second - NSAID stands for "non-steroidal anti-inflammatory", meaning that it works differently from a steroid drug and it works to combat the inflammation the RA causes. This is significant because steroids can also be taken for pain management. Prednisone is a commonly prescribed steroid, and it's usually taken at a high dosage for a short period of time during a flare...*sigh* Ahh, prednisone. We love it and we hate it! It can make you feel like a superhero, but it also makes you eat everything in sight so that you inevitably gain 5-10 pounds. It can affect your mood drastically, so that PMS feels like a peaceful holiday in comparison. My friend, Carol, has a great blog about her experience with RA, and you might like her assessment of prednisone: www.tenn2texas.wordpress.com. 

Then there is the depression. Let's be real right now and admit to ourselves that half the country is taking anti-depressants. It isn't something to be ignored or whispered in hushed tones, it's a reality. It's even more prevalent among people with an incurable, lifelong, painful disease such as RA. Most of my friends with RA take Zoloft or some other anti-depressant medication and find that it helps them. I'm extremely fortunate to have a mild case of RA and I can lead a life closer to normal than many of them. But faced with pain every single day that ranges from  a throbbing 3 on the pain scale to a gnawing 13.5? That would likely depress me, too. During my last flare in 2010, I had a supportive family and a happy life (and still do!) - these are a huge help! Others aren't as fortunate, and I believe depression finds them quickly when their family is unsupportive and other stress factors are in place.

Equally important, there are numerous treatment options for the long term consequences of RA. Even if our day-to-day pain, fatigue, and depression can be managed, that is only the beginning. We have to do all we can to prevent further damage to our joints and organs, or we risk making our situation much worse. Thankfully, there are medications that can suppress our overactive immune system and help slow the inflammatory process. Maybe we can keep the disease from moving onto different parts of our body with these drugs and a little hoping and praying. None of these drugs comes with a guarantee, though. In fact, they come with more side effects and risks than we would like. I'll write more on this important subject later, but for now I'll bring this long post to a close. More on the pricey and dangerous treatments of RA coming up soon! For now, here's wishing everyone a happy fourth of July weekend!! :D

3 comments:

  1. You have nailed it, Hayley. When my RA is really bad my husband says, "Arthur is really beating up on you." So many people don't understand the constant battle we face trying to find the right medication mix and getting through the day with constant pain.

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  2. Your post nails everything right on the head!
    I called my arthritis Arthur once and my husband cracked up. He thought I came up with the name and named my disease myself lol I let him think it since he found it so cute :)

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  3. Thank you both for the comments! :D Carol, I'm glad you also have a hubby who "gets it". He sounds like such a wonderful man from your blog! Genny, I'm sure I would have dome the same thing, lol! :D

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