Long story short: My current meds leave a lot to be desired. A week ago, I was in to see the rheumy, and commented that I didn't think the sulfasalazine was working very well (and neither is the humira, but heck it's only been 3 months on that -- also, I'm currently taking 30 pills per day, and have a topically applied treatment, plus a bi-weekly injection -- 4 pills a day would make a difference). He calmly said "Let's find out." I should've run. No really, I should of hit the jets and got the heck out of there Iceman!
He said to go off it and wait a couple of days (for the inevitable bite of dc'ing an RA drug) and then see how I feel, with the caveat that if I still felt the same after 2 weeks to then go back on it and see if I noticed a difference after the holiday.
Yeah. So, after a week, I went right back on my bumpy little friend after 1 week and I'm not looking back. It's been 3 doses since, and I already feel better than I did off of it.
Here's the after action review:
Miserable is not the same as #$(@*#&*$ MISERABLE 
.
Here's what I noticed changed being off the drug:
1) Lot's more movement impairing pain (and lots of pain pills)
2) LOOOTTTTT'S more stiffness of the 24 hour a day kind
4) An inability to count
B) Freakish increase in fatigue -- I mean, back to sleeping 16 or so hours a day
5) Really, really bad mood (which my lovely wife always attributes to a largish increase in pain levels that my naturally stoic genetics pretend is merely 'uncomfortableness')
Will sulfasalazine take me to remission? IMO, no freakin' way, but I can't take what will without sacrificing my liver. That said, it does a lot, but the 'lot' looks like a little over time when I still find that I can't really do anything I want to. It's no magic pill, but it's not tylenol ;)
and no reaction on my part. Good luck!!!
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I feel better on the meds - but there are so many meds! And I don't feel better, better! I so want to feel better better! Are all these drugs really working?! But the swelling is less and the stiffness is less and the pain is less - it is just, unfortunately, not gone. I would so love gone. I am trying to learn to live a full life with where I am but I am not sure I can. Is this where you are? It's just not working enough? Sure sounds like it. So the drug holiday proved that they do help, but not as much as you want them to. And you still have uncontrolled symptoms. Does your rheumy have any ideas for the additional symptoms?
that's it exactly, Leslie.
My rheumy has been saying "we're running out of tricks to try" and the like. What drives me bonkers is that both MTX and Arava worked -- like magic worked -- but both have an obscene hatred for my liver... My rheumy has mentioned sending me to see an MTX guru several times, but mostly to see if he can set some limits on FLTs, and to give me a more accurate vision of how many years of my life I'd be trading for a better quality of life now. Scary with a capital SCARY.
I've still got some biologics to try, but I've been through 5 in about 20 months. I think my rheumy wants to slow down so we don't try everything right away. I think I get it, but part of me says "if none of them are going to work, what difference does it make if I burn through them quickly?" I dunno. I get some relief from humira, and got a little more from Orencia. In 4 months, if the humira is not more effective, I will either push to try the at-home-Orencia or maybe try Actemra again (took it once with a mild reaction).