Rheumatoid Arthritis

Submitted by: Kimmie

Rheumatoid Arthritis (RA)

It’s not your grandma’s arthritis!

Being diagnosed with Rheumatoid Arthritis can be shocking and scary. I knew something had been wrong for a while, but often times, getting on the right road and to the right doctor is a long process. Thankfully, mine only took a few months. Some people are not as fortunate and it takes years for a diagnosis. As far as I know, there is no definitive test for RA. There is an RA Factor test, however even if that comes back positive, it doesn’t always mean that you have RA. A better indicator is an Anti-CCP test. There is also something called a Vectra test, but from what I understand, not many doctors order this test. There are markers, but some people have completely normal blood tests and yet have crippling RA symptoms. In this case, it’s called Seronegative RA. In my case, I had elevated blood levels and symptoms indicative of RA.

Unfortunately, A lot of common mistakes are made when talking about or receiving a diagnosis of RA. RA is a chronic progressive disease. The word arthritis is very tricky in this situation and personally I feel, as do a lot of other RA patients, that it should be changed to Rheumatoid Disease, because RA, does not only affect the joints as in Osteoarthritis. RA belongs to a family of autoimmune diseases. Here is the description from the Arthritis Foundation Website:

“Rheumatoid arthritis (RA) is an autoimmune disease in which the body’s immune system – which normally protects its health by attacking foreign substances like bacteria and viruses – mistakenly attacks the joints. This creates inflammation that causes the tissue that lines the inside of joints (the synovium) to thicken, resulting in swelling and pain in and around the joints. The synovium makes a fluid that lubricates joints and helps them move smoothly.

If inflammation goes unchecked, it can damage cartilage, the elastic tissue that covers the ends of bones in a joint, as well as the bones themselves. Over time, there is loss of cartilage, and the joint spacing between bones can become smaller. Joints can become loose, unstable, painful and lose their mobility. Joint deformity also can occur. Joint damage cannot be reversed, and because it can occur early, doctors recommend early diagnosis and aggressive treatment to control RA.

Rheumatoid arthritis most commonly affects the joints of the hands, feet, wrists, elbows, knees and ankles. The joint effect is usually symmetrical. That means if one knee or hand if affected, usually the other one is, too. Because RA also can affect body systems, such as the cardiovascular or respiratory systems, it is called a systemic disease. Systemic means “entire body.” 

This disease can affect anyone, from the very young to the very old. It affects everyone differently. One day it can cause major pain, swelling and immobility, and the next, you can feel better. Flares, can come out of no where and go on for a day, weeks, months, years. Stress plays a big factor in flares. I know when I get very stressed, a flare comes on.  Some people have issues with certain foods that trigger their flares, such as; eggplant, tomatoes, salty foods, or sugar to name a few. It’s different for everyone. When it hits me hard, I can barely get out of bed. When it first hit me, I couldn’t open my own water bottle. My arms and legs felt like they were weighted down. A had a mild fever. A very scary feeling.

Though there is no cure for RA, it can usually (not always) be managed. Although not everyone has an easy time. Sadly with an autoimmune disease such as this and many others, often you go from one drug to another, combining and changing, praying you find something that works. Steroids are prescribed and usually can help with a major flare. But we all know that long term steroid use is very damaging to your body, especially your kidneys and liver.

One of the first lines of treatment is with Disease Modifying Anti Rheumatic Drugs (DMARDS) One of them is a Chemo drug called Methotrexate. Yes, I said Chemo drug, with all the side effects that come with it. Unfortunately in many cases, this is the “anchor” drug for RA. Anchor drug meaning, if it doesn’t help on it’s own, other drugs are added to it. This drug kills your immune system. In many cases when a person with cancer receives Chemo, they get it in a high dose for a short amount of time. With RA, there is no end unless you change drugs, so it’s a state of continually being on a harsh drug to help you’re RA, but hinder your health. Yes it’s given to you in a much lower dose than someone with cancer. But you can still get nausea, hair loss, sores, infections, ect. Side effects vary from person to person.

My first Rheumatologist insisted on Methotrexate. I didn’t want to take it but I reluctantly gave it a shot. I broke out in a rash after the first dose. He said it was not the medication, that it had to be something else. I really didn’t want to start with this drug and I asked him for something less harsh. Basically he wouldn’t even discuss it and said no. I had no faith in someone who was adverse to trying something with less side effects first. I changed Rheumatologists (it’s not uncommon for RA patients to go through a few until they find a good fit). So far I like my new doctor. He listens and takes into consideration my wishes.  He suggested, and I opted for the drug with less side effects called “Plaquenil”. Now, less side effects does not mean no side effects. Plaquenil can cause damage to your stomach and your vision. Eyes must be checked by and Opthamologist every six months. Every drug comes with risks. It’s a balancing act.

If the DMARDS fail, then next line of treatment is Biologics, such as Embrel, Humira, ect. You’ve all seen the pretty commercials. Unfortunately for many RA patients, those commercials are fairy tale. Not saying some people don’t have miraculous results, but there are many who do not. Those commercials do a great disservice and make people who do not understand this disease think you can just take a pill or give yourself a shot and you 100% better.

It is important to have a good support system and help. Unfortunately a lot of RA sufferers do not have that. When RA begins, there are usually no outward signs. Sure, you can tell people you can’t move, but you look fine to them. People tend to think you’re faking if they can’t see the pain that is raging inside your body. And let me tell you, it can rage. People also tend to say things like “When you all better, we’ll do this or that.” What people don’t understand is that you will always have RA unless through a miracle, you are healed. Also, because of the RA meds, you have to be very careful around anyone who could be sick, because you basically have no immune system. The purpose of the meds is to suppress it because it is overacting and attacking your body. You have to learn to live your life as this being the “new normal.” I’m not saying don’t live your life.  You just have to be careful and more aware. 

The reason I am writing about this is because, while I definitely don’t think people with my disease should be pitied (hate pity), we should be understood. Yes, it’s hard for people to understand how you can hurt so bad and look just fine, if a person has no joint damage yet. But, we are usually not fine and at any given moment can crash. Like I said, it’s NOT your grandmother’s arthritis. It can attack, women, men and children, young and old. It does not discriminate.

I was very fortunate to find a good RA support group on line. We are there to listen, and give and get support from people who understand, because they know exactly how it feels. When someone is down, we tell them it’s ok to be down but tomorrow is another day to fight. We are RA Warriors!