Hi Jess,
I'm in a similar position right now myself. I was diagnosed last yer wit As after four years of not knowing what it was. I was given anti-inflams, and they just didn't seem to take the ede off, or stop a flare...so my doc kepy prescribing them for me. Every time I started a new med, my hope would be up so high...and after a month of two of being on the meds, with nothing happening, I would be so low and wonder why nothing was working for me. I was then prescribed Enbrel (biologic), and man, I was really keeping my fingers crossed because a few doctors that I had seen have basically said that this is the new wonderful miracle drug for many AS patients...giving these people a new leash on life without hurting. So, my hopes went so high when I started injecting myself (ugh...had to try to keep focused on the light at the end of the tunnel every time I stuck myself every week)...but then alomst 4 months passed...and nothing...no real improvement overall. I was sad sad sad...so, my doc said let's go to Remicade (I guess it's the last resort drug for many). So I have had four infusions thus far...but this time around, I did not let my hopes get too high...and so far the Remi has done as little as the Enbrel. I mean, I got infused last Thursday, and went into a wicked flare on the evening on Friday night that lasted the whole weekend (felt like someone had pummelled my ribs and left bum). I have one infusion left to give this one a fighting chance, however, I am skeptical at this point since I have had poor response to it so far. But, at this point, I am ok with that. If I have to live the way right now...I could manage because I am on a short-term disability, that could lead into long term disability, and if that happens, so be it. Every day I need to focus on myself, and work on exercising in some form (I swim and do water therapy) and focus on my eating and choosing the right food choices.
The point of my rambling is that sometimes we feel really disappointed that what the doc has given us is not working. It's made me very sad and very down in the past 6 months, but you can work your way through it with a positive mind. It's ok to feel let down and dissatisfied when things aren't working...but then that is also the time to start a new chapter and look in to other things (i.e. maybe homeopathic remedies, accupuncture, something like that), and go to your doc and ask for something else.
Keep striving ... even if you are feeling poopy about the situation at hand. And of course, come and talk to us!!!!
We're always here for ya to talk to and vent to (Lord knows I've been whining about stuff these last couple of months!!!).
You take good care,
Trina
p.s. this was written in a pain medicated state on my part...hope that it makes some sense!!
