Welp, I’ve been on Orencia for about 4 months and if anything I’m getting worse (my skin is definitely getting worse - I haven’t had psoriasis this bad since before I was Rx’d with PsA 7 years ago). So we’re trying to switch my infusion for tomorrow to Simponi (though now I think I might be getting sick so that might be a wash, though I’m still trying to convince myself it’s just that it’s cold out and I really really need to stop smoking (I have a quit date planned for the 22nd, my last day of work before a nice 10 day vacation where I can be a grumpy pus without affecting anyone but myself)). I’ve also been much more fatigued than usual - which is saying something because my fatigue has always been awful, but right now I can easily sleep 10 hours a night and barely have energy to do regular daily tasks. But everything hurts (including my skin, and oh my scalp is just one giant plaque - it’s so bad my hair has weird cowlicks from them), and everything is awful.
Except it’s not that awful - I have been managing to take my two dogs on regular walks a couple times a week (I usually try for about every other day; it doesn’t always work out that way though), and even though my left foot (which has been a mess for over a year now) hates it I can manage it without too much pain or swelling as long as I rest after. I’ve lost about 15 pounds (give or take - I think I was at 88 kg, and I’m down to about 80 kg now), and I dumped my (now ex-)SO because all she did was add stress to my life and honestly make everything worse (there’s more to it than that, but a story for another time and place). So really - things are better, it’s just that my body is a great big pit of nope right now.
I was really hoping I was just having a post-stress flare (the summer was awful, what with being broke, breaking up with my SO, and whatnot) now that I’m not uber-stressed any more, but I’m pretty sure the meds aren’t working and I’m worried that the new meds won’t work either (or I’ll have terrible side effects like I did with Enbrel and Humira) and nothing will ever work.
This will be biologic #6. (Simponi Aria - I’ll be doing infusions)
I’ve tried so many: MTX (still on), Plaquenil (allergy), Enbrel (allergy), Humira (failed), Cimzia (failed), Cosentyx (failed), Leflunomide (failed - side effects), Otezla (failed - side effects), Orencia (failed)… Eventually I’m going to run out - even my Rheum get’s this look on her face like “what do we have left to try?” when I go in - I know we’re running out of options and it’s depressing as heck…
Ack. Oh, well thanks for listening to me complain. I hope everyone else is having better luck with their meds this year than me!