RA is a systemic disease which often affects tissues throughout the body including the skin, blood vessels, heart, lungs and muscles. It affects many joints but is most known for the damage to the hands. In it's later stages, nodules form over the bony prominences in the hands and will curve the fingers (most often) towards the pinkies. However, medications now available profess to not only halt the disease but to repair damage as well. I'll keep you posted on that last.
So, basically, it hurts to write, type, do up my buttons, tie my shoes, zip my pants, cook anything that requires that I lift the pan or clean the pan, open a jar, reach above my head to bring something down, blow dry my hair, and drive. We use our hands for SO many things that we do not think about how vulnerable we become when our hands fail us. So now I prebutton my shirts, wear slip on shoes, buy take-out more often than I can really afford and have someone come in to clean. Jars and my hair...well...I'm on my own. All of my medications lack a child-proof cap because I cannot open them when my hands hurt. I can, however, open a cap with my teeth if I must, so at least I can get to the meds.
As to that - there are a few medications out there for RA. The first one all insurance companies will make you try is methotrexate. Methotrexate is what is known as a DMARD or a Disease Modifying Antirheumatic Drug. DMARDs halt disease progression and have been known to produce durable remissions. However, this particular medication gave me migraines, so I did not take it for long. Taking DMARDs early helps prevent structural joint damage, and it is the first thing you will receive from any rheumatologist. The next step, which, as I said, I reached rather quickly, is a drug called Enbrel. Enbrel is a biologic agent known as a tumor necrosis factor alpha blocker. In fact, Humira, Enbrel and Remicade are all TNF blockers but they have different bases. Enbrel has a manufactured base, Humira has a human base, and Remicade (I believe) is both mouse and human based. I took Enbrel for the last year and it worked well enough. The problem is that it costs $400 IF YOU HAVE INSURANCE! It costs $1200 without insurance. The only factor that mitigates this highway robbery is the fact that the manufacturers have a program called "co-pay assist" and they'll help you out with most of it. My co-pay for the last year has been $75 a month while injecting Enbrel once a week.
My Rheumatologist has decided it is not as effective as she would like, so I was switched to Humira, which comes in an injection pen (as opposed to a syringe like Enbrel). Little did I know how much this was going to hurt! Not a fun experience. I will say that, for me, it is more effective than Enbrel. I think I'm actually going to sleep tonight.
In terms of dealing with the pain, the first rule is to stay warm. Really. Stay REALLY warm. It helps keep the inflammation down in the joints and, consequently, helps with the pain. My truest friend knitted a pair of Fagen gloves for me so I could drive my daughter to school every day and it really helped. If you are in dire straits, take a bath as hot as you can stand it and stay in for 20 minutes. This might seem counter-intuitive since swelling calls for ice in most instances, but trust me, you NEVER want to put ice on RA pain and a bath will help. Do not waste your money on arthritis creams...they're for the osteo and will not do you a bit of good. You can, however, get heat wraps for your hands at most drug stores, and they last up to twelve hours. Sleeping will be a problem because by the end of the day it all hurts worse - hands, elbows, shoulders, neck, back, hips...all of it. I have not yet found a way to make this better other than sheer exhaustion. Opioids don't really help and anti-inflammatories help only a little. The best thing you can do is learn to meditate and try to find a happy place.
So, that's it for tonight...my hands are starting to hurt! :-)
Posts
