it’s been almost six months since i’ve updated, and although i have a lot to say, i want to try to keep it concise. mainly because things are going well!
the major updates:
i dumped dr. d. — i found a new doctor, dr L, and i love him. he sat with me for an hour and said “tell me everything” as he wrote it on a blank sheet of paper. he held a meeting with numerous radiologists just to review my second foot mri and walked me through why it was so strange. he didn’t want to put me on enbrel right away until he understood my case a bit better. all wins.
i started enbrel — after about a month under dr L, my symptoms were coming back (changing seasons perhaps?) and i was getting frustrated. he didn’t know if we’d be able to even get enbrel approved for me since insurance companies require a certain degree of disease and number of joints affected to approve. dr L seemed to sweet talk them though because within a few weeks i was at his office with nancy-the-nurse who was helping me do my first injection.
giving myself shots — this is not nearly as scary as i thought it would be. once a week, in the thigh, using an epi-pen-type tool that makes it so easy. it practically does the work for me, so other than a 15 second pinch, it’s nothing. the amazing thing is, the enbrel works…
off the other meds! — … and because it works so well, i am completely off the prednisone and plaquenil. all i take daily are vitamins now - it’s still kind of shocking. i noticed my symptoms dissipate in days. the enbrel works by killing the tnf inhibitors in my immune system and those are the guys that make the system attack my joints. without them, i’m pain-free and not causing permanent damage.
my immune system is fragile — that said though, my immune system is basically broken down on purpose. i got a severe cold and the flu that was going around in january that pretty much drained me. i need to be extra careful to wash my hands at work, after shopping, and post yoga. because we’re weakening my immune system, my life chances for getting lympoma or other cancers is about 3x higher than what my chances were off the enbrel, but that’s not really a worry. the bigger worry is letting an infection (cold, flu, etc.) take over without being treated. this is typically how people with ra get really sick. but i just check in with dr L when i’m sick, skip my weekly injection til i’m better, and all is well.
the minor side effects — with enbrel, i get a couple minor side effects. clear mucus collects in my lungs, especially in the morning. some days it’s worse than others, but honestly, i’m a mucus-y person so this isn’t bad or all that a-typical. i’ve cut back on a lot of dairy to lesson it. i also get large red, hot, itchy patches at the injection site on my leg about 5 hours after my injection. they last for about two days and then go away. at first this was really irritating to me, but its normal and honestly, much better than the alternative. i recently went to puerto rico and i put a lot of energy prior to our trip, planning when i was going to take my injection. i wanted to take it prior to the trip, so i didn’t have to a) travel with the injection b) have a red welt on my leg while in a bikini and c) so i didn’t have any joint pain. i ended up taking it just before the trip and dealing with the red welt on the first day. i thought it would bother me, but it didn’t. it’s minor and temporary. had i not taken the shot to avoid the welt, i would have had foot pain walking around old san juan for three days. lesson learned: just take the shot… a 36 hour itchy spot is nothing.
returning symptoms — my symptoms typically return about 12-15 days after each injection. so although i’m supposed to take it once per week, i’ve found that the more often i take it, the weaker my immune system is (logical), the more likely i am to get a cold, and since i don’t feel pain until about 2 weeks post injection, i’ve talked to dr L about going to twice-per-month shots. he’s cool with it and it’s been working better for me overall. and at $10/shot, it’s nothing, cost wise.
the go-forward — so ii took me almost a year, but i finally found a safe medication that is actually working. i’m generally happy and think very little about this whole thing. i’m seeing dr L later this month and we’re going to talk about my foot. it still swells and hurts where the mass/nodule is, so i may consider surgery to get rid of it. for 2013, i picked a higher-cost insurance so i’ll pay less out of pocket and be covered in cases where things arise that are more of a surprise. i’ve learned that everything i do has a cause and an effect. i can pick a new doctor and have a new outlook on my situation. i can’t take a medicine without side effects. i can make a decision but must realize there are always consequences. i just have to pick wisely and choose with effects i want and which i don’t. all-in-all, as long as there’s options, that’s pretty great.
until next time… and hopefully not for awhile…