I have decided to publish this in the format of an F.A.Q., so that one may scroll through information to find the answer to a specific question.
Bear in mind that these are my experiences with my disease. The following post is not to be used to provide any accurate medical information regarding RA. I've done some research on the subject, but I'm not a rheumatologist or even much of an expert. If your joints hurt, go see a doctor. Don't get your medical advice from a city planner. If you do, you're a moron.
Q. What do you have exactly?
A. I have a form of arthritis in the rheumatoid family of diseases. Specifically, I have a spondyloarthopy, in the form of ankylosing spondylitis. It is most likely psoriatic arthritis, although I have not developed psoriasis. I have enough to deal with, thank you very much.
Q. So what is a spondilly--a spoody--what you said you have?
A. It is an autoimmune disorder which, very basically, causes my white blood cells to attack healthy tissues, which is naughty. The "spondyl" in the aforementioned diseases means "spine," although (again thankfully) my spine has not been affected as much as it could have been with this disease. It instead went after my extremities, and my eyes.
Q. I'm confused. Do you have RA or not?
A. I do not have actual Rheumatoid Arthritis. I have a disease that's very closely related. Both are immune system disorders that mainly attack connective tissues. It's just easier to say "I have RA," because more people know what RA is, and saying "I have Ankylosing Spondylitis," only invites more questions, which I get tired of answering.
Q. Arthritis? I have that in my elbow.
A. Wrong kind of arthritis. Osteoarthritis is a degenerative condition affecting a single joint over time. It is caused by normal wear and tear of the cartilage in the joint, and is a common condition of aging. It has nothing to do with the immune system, and is not an aggressive disorder where anything is attacking anything else. If you really want to annoy an RA victim, say this to them.
Q. So what's it do?
A. Well, in my case, it's mostly attacked my synovial linings. Those are the membranes that separate one bone from another. It's also caused inflammation in my corneas.
Q. Hold on a sec. You can't get arthritis in your EYES.
A. With my type you can. Most forms of RA, if left untreated, will eventually become a systemic problem, meaning it moves into other tissues besides whatever you got in your joints. Eyes, mouth, liver, kidneys, all are fair game.
Q. You mean to tell me you're gonna get arthritis in your liver?
A. I could, theoretically, but probably not. The medications I take are extremely potent, and are meant to prevent the disease from going systemic.
Q. What kinds of medications?
A. Here's where I have to get all technical, and use a lot of acronyms. I take one TNF inhibitor, and one DMARD. TNF stands for Tumor Necrosis Factor, and it's one of the components of the autoimmune system that tells my white blood cells what to attack (only mine's messed up.) The TNF inhibitor, Remicade, costs in the neighborhood of $60,000 a year and I require a three-hour I.V. infusion to have it delivered, though they're trying to work that one back down to an hour or so.
DMARD stands for Disease-Modifying Anti-Rheumatic Drug. My particular brand is Imuron, which is an immunosuppressant. It's supposed to keep my white blood cell count to a reasonable level so it doesn't build up a resistance to the Remicade, and go easy on my liver.
Q. Sounds difficult to manage.
A. It can be. When I was suffering the chronic inflammation of my corneas, my eye doctor, on the advice of another rhuematologist she'd consulted (who had never examined me), added an extra DMARD (Plaquenil) to my cocktail (Remicade & methotrexate), which gave my chemical hepatitis--a medically-induced inflammation of my liver. Other meds have given me anemia or dipped my white cell count to dangerous levels. When I was taking Enbrel (a less-intense TNF inhibitor), I got sick all the time.
Q. Holy Crap! How come you have to take such powerful meds?
A. My arthritis has been especially aggressive for the type it is. Your results may be different. Okay, here's the medication progression, as I've come to understand it (prepare for more acronyms):
- NSAIDs (Non-Steroidal Anti-Inflammatory Drugs): These are your least potent meds. Many are available over the counter. You know them as Advil and Tylenol. Aspirin, acetaminophen, ibuprofen, naproxen. They also come in prescription strengths, and some, like Torbidol (an injection) and Celebrex are ONLY available by prescription.
- SAIDs (Steroidal Anti-Inflammatory Drugs): As the name suggests, these are steroids. They are usually given as a supplemental medication, for when you need a little boost in your fight against inflammation. They aren't usually used long-term (although they can be) because they're pretty nasty characters. These include Prednisone (my personal favorite), cortisone (an injection given at the site--not so fun if the site is an ankle), and Solumedrol, which I take with my Remicade--not for inflammation, but because I had an allergic reaction the first time I had Remicade, and the Solumedrol prevents this.
- DMARDs: Congratulations, you've moved out of suppression of inflammation and into prevention! These meds are usually some sort of immunosuppressant, the idea being that less white cells means less damage. Plaqenuil, sulfasalazine, and methotrexate are some common ones.
- TNF inhibitors: A branch of the DMARDs. Essentially, they give the immune system something to do so it doesn't get bored and go about vandalizing healthy tissue. These are the big guns.
Q. Wait a minute--you said "damage"?
A. Yes, unfortunately. Due to the aggression of my disease and the stresses placed on my joints in its early stages, my arthritis has destroyed one wrist, one index finger knuckle, and both feet (see illustration), all of which have been fused. My eyesight has also been worsened significantly.
Q. Nice Photoshop job.
A. No, that's my real foot.
Q. Oh noes! I'm related to you! Am I or my offspring gonna get this?
A. Probably not, but you can never rule anything out. Without getting too technical, I will say that there is a genetic component to this, but the gene in question only affects your predisposition to contracting autoimmune disorders. That being said, these disorders do seem to run in my family. My aunt had full-blown RA, my father has Polyarteritis Nodosa, which I believe affects the blood vessels, and my daughter has the juvenile version of my particular disease, although hers is nowhere near as bad as mine, and in most cases, women go into remission once they hit their twenties.
Q. What's it feel like?
A. Ever twisted your ankle? Jammed your finger real good? Sprained your shoulder? It feels a lot like that.
The inflammation moves from joint to joint. Usually if I have a flare up in a joint, it goes away by the next day. Occasionally inflammation settles into an area to do some long-term damage, hence my fusion surgeries. Oddly enough, the first flare-up I ever had was in my left thumb. While using a high-powered drill, the bit grabbed the material I was drilling and jerked my hand. I thought it had wrenched my thumb. But the pain travelled into my wrist after that. Within a couple of months my wrist was unusable.
Q. That's horrible! How bad can it get?
A. At the time I developed the disease, I was working as a welder in a manufacturing plant. The physical stress placed on my joints played a large part in the rapid progression of my disease. I was soon pretty much unable to continue my duties as a welder. I spent the next nine months with inadequate insurance coverage.
During this period, I lost forty pounds. My jaw was inflamed to the point that it made eating painful. My ribs flared, and made it difficult to breathe. I couldn't walk without the aid of a cane. (As one physical therapist put it, I was doing the "old man shuffle.") Once I had reacquired insurance, the nurse practitioner who was treating me called me a train wreck.
So now I have a screw in my right index finger (nearly fainted when I saw the x-rays for the first time), an eight-inch long plate in my left wrist (the orthopedist removed the end of my ulna to fill in the gaps in the wrist bones--never look at your surgery orders if you don't want to see items like "Stryker Bone Saw" listed,) five screws and five staples in my right foot and five screws and six staples in my left (they had to break that one to make it look like a foot again). For the feet, the took bone grafts from my hips to fill in the holes. Oddly enough, my hips hurt more than my feet after the surgeries. It took more than a year to repair me, as they had to fix the hands before the feet so I could use crutches, and they had to do the feet one at a time obviously.
That's the worst I've ever been. I know plenty of arthritics who've had it worse.
Q. What are your limitations?
A. I can't bend my finger, I can't bend my wrist or twist it while holding something for very long, I can't put weight on the balls of my feet, my feet don't bend sideways (lateral flexion), I can't make that stupid heart thing with my hands (thank god, 'cause it looks absolutely ridiculous), I can't take Tylenol (liver thing), and I can't stand for very long or walk very far (I'll explain the concept of "step banking" in another post.) Individual occasional flare-ups may limit other activities. The week before Remicade I can't get sick or they postpone it (which hurts), and for a few weeks after I'm more susceptible to infection, so I shouldn't be around those with any illnesses. The further I get from Remicade, the more resistant to infection I am, but I'm still more likely to get sick than most.
That's about everything I get asked regularly. If you have any other questions, pick on somebody else.
