“So what do we do? Anything. Something. So long as we just don’t sit there. If we screw it up, start over. Try something else. If we wait until we’ve satisfied all the uncertainties, it may be too late. “
A couple months ago my rheumatologist pulled me off all my meds and told me to wait out my current cycle of sinus infection, sinus infection, sinus infection. I decided that if I was going off the good stuff, I may as well go off everythingeverything, supplements included until this all panned out. So I did. I went off everything. Thanksgiving (all five of them) came and went. My husband traveled a whole bunch. We got ready for and had Christmas and all the school & friendly events that that entailed. I smashed my head into the kids bunk beds one night and then the trunk lid fell on my head not once but twice in a week’s time and I ended up with a concussion and have been suffering from some post concussion symptoms. But that’s not what you want to hear about. You want to hear about how my RA went without the drugs, right?
Here’s the surprise: being without drugs was very similar to being on the drugs, but with the added bonus of not having any of the nasty side effects of the drugs. I wasn’t nauseated (until I hit my head, that is) and I wasn’t exhausted and my mind wasn’t cloudy (again, until the head injury). I was actually quite well. Sure, my knees were inflamed and my hands and my hips and oh, the back pain. Actually, the back pain was really all that was awful. Everything else was just more of the same, but maybe a little bit worse than usual day to day with the drugs.
So by the time I went back to see the rheumatologist again I’d decided something: I wanted to go back to the beginning. No, not to the drugs that I already knew didn’t work, but I wanted to go back to just a DMARD and an NSAID. I wanted to try something I hadn’t tried yet and I wanted to start small and really give a new drug a chance to work before being taken off of it after a couple months. So I went in and we checked his handy dandy chart of what was available and what I hadn’t tried and we settled on Arava (leflunomide) and Naprelen (naproxen sodium). I’m taking the lowest dose possible for the next 6 weeks and then we’ll see where I’m at (and do those all important blood tests that we’d been lax about lately).
The only problem? I got a phone call from the doctor’s office later that day saying that the pharmacy didn’t have my drug in stock in the right dose and that I’d have to cut them in half for a while. No problem, I thought. Then I got a call the next day from the pharmacy saying it still wasn’t in. Friday (three days later) it finally was, but had to send my husband out for it, as I was busy with my parents. He talked to the pharmacist who had tons of instructions (usually they say little-to-nothing to me when I’m in there), and the pills were little triangles, so I had to go back in on Sunday. When I talked to the pharmacist he told me that a) I shouldn’t touch the pills unless absolutely necessary, b) I shouldn’t cut them until the day I use them, c) I need to take them precisely 12 hours apart (set an alarm!), and d) these pills are very hard to come by, so expect delays in getting them or differing dosage of pills or having to come in a couple to a few times a month to pick them up.
AIE. At this point I really wondered if it was worth it, but it’s the only DMARD I haven’t tried and as the pharmacist pointed out: “What’s better: to find out that this inconvenient drug is the best thing I’ve tried or not to try at all and miss out on something that might do wonders for you?”
So I’m on to day 2 of the Arava/Naprelen combo. Yesterday I was very easily flushed (I have super sensitive skin) and a bit nauseated when dinner ran late. Today I’ve been fine. No side effects yet. *crossing my fingers*