The Young and the RA

Having RA, I have always been interested in talking to others with the disease. One thing that has always surprised me, however, is how many people I’ve met with RA that DON’T see a rheumatologist — just a regular doctor with no expertise with the disease — and aren’t on any RA drugs. This is such a bad idea. I don’t know how these people think this is ok! They are ignoring the disease and completely ignoring the long-term effects of RA! 

If anyone has read my “why I blog” section, they know about my encounter four years ago. I was getting blood drawn at my rheumatologist’s when an older woman came in. She was extremely disfigured; her hands were gnarled, knees and elbows were bulbous and everything about her screamed pain. It turned out that she had been diagnosed with RA at the age of 18, but back when she had been diagnosed, they didn’t have any medications to treat the disease, so it ate away at her joints and caused her to look the way she does today.

This woman is a prime example of why it is so important to treat the disease and not just the pain!

“Rheumatoid arthritis can also cause inflammation of the tissue around the joints, as well as other organs in the body […] While rheumatoid arthritis is a chronic illness, meaning it can last for years, patients may experience long periods without symptoms. Typically, however, rheumatoid arthritis is a progressive illness that has the potential to cause joint destruction and functional disability” (Medicinenet).

Do you know what that means? If you are only taking painkillers to treat the pain and not treating the disease itself, you will look like the woman I saw in the doctor’s office!!! And yeah, old age is hard on everyone’s body, but you may be facing these problems a heck of a lot sooner than your friends (think wheelchair as early as your 40s). According to Medicinenet,

“chronic inflammation leads to the destruction of the cartilage, bone and ligaments causing deformity of the joints. Damage to the joints can occur early in the disease and be progressive. Moreover, studies have shown that the progressive damage to the joints does not necessarily correlate with the degree of pain, stiffness, or swelling present in the joints.”   

So you may feel fine on your Advil, but your joints may still be slowly eroding away…or maybe not that slowly. 

I actually have some personal experience with the effects of joint erosion. When I first showed symptoms of RA, I had stiffness and pain in my left middle finger. (I thought my finger was broken.) This stiffness started in about June of 2003, and I was official diagnosed and put on Enbrel (a biologic that treats the disease and helps prevent erosion of the joints) in December 2003. That’s only six months later, but already too late. I’ve been told that the ligament in my left middle finger has been destroyed and to fix it (and thus gain full use of the finger again because I can’t make a fist with my left hand, and it constantly looks like I am flicking people off!) I would have to have surgery. This surgery would comprise of taking a ligament from my thigh and putting it in my finger. Kinda scary sounding, hu? That’s why I put it off for so long! I actually have plans to meet with a hand surgeon next month to discuss my options. (Wish me luck!)

But back to the point. Only six months after I first started having joint pain I lost mobility in my finger. Yeah. That is pretty quick. That is why it is so important to be on the right medications and be treating the disease and not just the pain! If I continued to just use Advil and Aleve to treat my RA, who knows what other joints I might have lost the use of?

And how do you know what are the right medications?! Good question. GO TO A RHEUMATOLOGIST!!! A regular doctor doesn’t have anywhere near the expertise needed to make sure you are on the best and most aggressive treatment plan. Rheumatologists, especially ones at research universities, can help you discuss options and get on the best treatment plan. (Can I recommend UCLA? I have dealt with several doctors there, and they are AMAZING!!!! If you don’t live in LA, send me a message, and I can get my rheumatologist to recommend a great rheumatologist in your area.) Rheumatologists are up to date on the latest research being done in their field. They know what are best and newest treatments and will push hard to get you in remission. A rheumatologist can be your biggest supporter and best resource in your fight against RA. Don’t be a fool. Get one.

Until next time,

S.P.