there’s a lot going on and yet nothing going on at the same time but for some reason there is more than enough to say.
when i went off the prednisone completely, symptoms in my right foot (mass/nodule) and right knee came back within 48 hours. i also noticed a bit of swelling in my knuckles in the evenings. enough that i decided to go back on the 5mg prednisone every day.
when i went in for my check up, dr. d basically told me that meant the plaquenil wasn’t working and i needed to try something else (i questioned this beacuse plaquenil is said to take 3-6 months to kick in and it had only been barely 3). since i am 100% against taking/trying methotrexate (i.e. cancer drug mentioned in previous posts with nasty side effects that you cannot drink while taking), he suggested sulfazalazine. sure. why not.
sulfazalazine is a huge yellow pill you take a twice a day. its an antibiotic that is mainly used to treat coilitis but for some unknown reason (seriously), it works in mild cases of ra. lovely. so i start taking this with the understanding that if i remain on it i’ll have to get my blood tested once a month. ok, fine. i took the sulfazalazine for the two weeks without any trouble until…
(males/men/dad/guys/dudes: this is where you stop reading if you have issues with feminine part chit-chat)
…until i made the connection that the not-exactly-like-a-yeast-infection-infection i felt like i’d had for the same couple of weeks was probably due to the antibiotic nature of the medicine. the morning i connected the two together, i was also noticing the symptoms of a chest cold. DUH — antibiotics always give me a cold and a yeast infection, i should have realized sooner. i called dr. d and he suggested i stop taking the sulfazalazine. it’s been about a week and as far as i can tell coming off this drug has fixed all the “down there” issues.
so now what? well, to continue avoiding the methotrexate, there’s really only one other option. injectables. enbrel and remicade are similar, new and highly effective drugs for ra. developed in the last ten years, they basically treat moderate to severe cases of ra with very little side effects or harm to the body. the hang up is, you basically give yourself a shot every week or two. that and they’re super expensive.
at first i thought this was a really drastic approach — i’m not that sick. is this necessary? if it works will i have to do it for the rest of my life? what if they stop working and i become immune to them before i really need them? i don’t have moderate or severe ra, i cried thinking about being that girl that has to give herself shots (that’s hard to wrap your brain around), i don’t want to spend a ton of money on this. i told dr. d i’d think about it and this is what i’ve come to terms with:
first, i’ve decided now is the time to get a second opinion. i’ve made an appointment with a new rheumatologist and the upmc rheumatology and autoimmune center. different practice, different doctor, different ideas. i’m not really looking for a new/mis diagnoisis. i’m pretty positive i have ra. i just want to make sure the treatment plan and approach i’m on is the correct one for me to stay healthy. whichever doctor i feel better about, i’ll stick with.
secondly, i watched the video on remicade’s website about giving yourself the shot. with enbrel it would be once per week, with remicade once every two. not bad. if they work, i could come off the prednisone and the plaqueil and be down to just supplements and vitamins in the pill department. i think i could see the benefits of stabbing myself with a needle if the medicine actually worked. what i understand is it’s safe on the body as far as anyone can tell. where the predinsone has long term damanging effects, this does not (as far as they know). i wouldn’t have to get my blood checked, eyes checked, or watch what i drink. win. win. win. win.
and last but not least, cost. from what i can tell it will cost about $70 each month out of pocket for these drugs. however, both have a program with a discount card that knocks the co-pay down to about $5-10 each month. totally doable.
i’m going to hold off for now. dr. d wants me to come back in to start the prep work for these injectibles this week but i’m going to wait until a) i discuss with the new rheumatologist in mid-october b) i discuss with my trusted friend / ra partner in crime tara who i believe has been on them before and c) i do some more research.
so as of now, i’m feeling good and weighing my options. the awesome news is after coming off the prednisone for a few days and feeling symptoms, i decided to go back on every day but to only 2.5mg/day. dr d was happy with that. it’s 50% less and i don’t feel a thing. even more awesome news? i decided to try taking only 2.5mg every other day for the last week… still no symptoms! dr. d was also happy about that. a month ago i was taking 35mg/week and now i’m down to 10mg/week! excuse my french, but FUCK YEAH! part of me wonders if the plaquenil is slowly starting to work… :)
ok so now you get why i’m saying a lot is going on and yet nothing is going on. my medicine is changing. i’m playing around with new things and weighing new options. what’s not going on? symptoms. i dont feel bad or sick or anything. if i have “a bad ra day” every now and then, its not because i feel pain, it’s because i’m frustrated and emotionally drained thinking and talking about medication, etc. when i literally feel perfectly healthy.
so there’s the update. stay tuned…