I’m getting dangerously close myself (Tremfya is the only thing I haven’t tried and I’m currently on Remicade which also doesn’t seem to be working though I’m pretending I’m just in a flare, that’s been ongoing since last spring…). I’m worried my PsA is just never going to respond to anything and I’m going to just steadily decline. I’ve never made it longer than a year on anything before it lost efficacy. I’m in constant pain, my feet are always swollen and shoes don’t fit, and today my hip screams at me when I move or put weight on it.
Anyone else run out of options? What did you do?
(I honestly don’t have the energy to deal with diet modifications and have struggled with disordered eating in the past so frankly just eating is usually a win, even if I don’t look like it, so that’s probably not the best option for me).
Yup. Failed xeljanz (which didn’t work and made me depressed to boot - that was also the medication I was taking when I started getting intense muscle spasms - like charlie horses but in places like my armpit. I still get them though not as intensely).
As far as I know the others haven’t been approved for PsA yet so I can’t try them.
I don’t know too much about them because I haven’t yet needed to investigate them for myself. But I’m pretty sure more than one is approved for PsA in the UK. I’ll find out and let you know. Usually we lag begind you on such approval also.
@SubliminalFlicker, I’m just hitting 7 weeks on Rinvoq which is likely the newest JAK inhibitor. So far…if I’m optimistic, I think I am starting to notice subtle quieting of the pain. Especially after I have kind of pushed myself and walked too far or stood too long and was expecting to pay for it later…things aren’t at a constant squirming to find a bit of relief level. I’ve had three nights in which I’ve slept for 5 hours strait, this hasn’t happened for 2 years. So I am cautiously optimistic that perhaps Rinvoq is taking me in the right direction. The only side effect was painful sores on my head. Almost like a form of acne but more like a mini boil. They were painful and never came to a head and would then fade away. Maybe 2 or three of them at a time sometimes on my face. Looked like a sixty one year old teenager! There are other aspects of my youth that I would prefer to return to! Those started after three weeks into Rinvoq but have suddenly stopped. My rheumy had to use wise wording in order to get Rinvoq on the approved list so I don’t pay for it. It has only recently been approved for PsA. Or, the flare has backed off just to be nice. But the devil is never nice without an agenda for more misery!
My rheumy was quite excited to give me Rinvoq instead of xeljanz as a better replacement.
I don’t think that one’s been approved specifically for PsA yet (at least here) and my insurance won’t cover off-label. I haven’t tried any of the IL-23 inhibitors (tremfya is one) so that’ll probably be my next route.