I’ve been on Benapali since just before last Christmas, and it’s been a wonder drug for me, but something has changed, and I think I need to admit it. My fingers and hands were the first to start feeling “wrong” again. Not hurting enough to bother me, but enough to remind me that PsA is still lurking. Then issues with my shoulder and collarbone - again, manageable, but something new for me. The last week and a half has been chest soreness and back pain. And then, today, that pain in my knees that I haven’t had in nine months.
Six weeks ago, the bloods came back showing no inflammation at all (ESR was 119 a year ago, in late July it was 3).
Two weeks ago, I was on a trip to see an old friend and off to the proms in London on the way back, and this state was unimaginable. No real concrete sign of it at all.
And now, I’m finding it difficult to think anything other than the fact that the walls are about to cave in once again. I keep telling myself it’s a flare-up. The knees are bad because I didn’t sleep well yesterday. That’s all it is.
But deep down I feel as if I know that’s not the case.
Flares can happen. And since it’s sounds like it started while you were away, I’m wondering if there was poor sleep, drinking, etc involved that may have set this off. Take good care of yourself and baby yourself a bit. You’ll likely be okay. And even if the medicine is pooping out, worrying doesn’t help any.
Let’s hope you’re wrong Darinfan. I only started Benepali in July. Sadly after 3 weeks I had to miss a week due to getting a tooth out. It lost some of its magic after that but only a little bit. But don’t forget there are others to try too.
I can understand how hard it must feel Darinfan. I’ve both had the experience where I had a flare and worried that my biologic was clapping out on me, then actually had it clap out on me.
The first was Enbrel - great results for arthritis, but between starting it and tapering off steroids, long dormant IBD flared up. Then Humira, plenty of ‘breakthrough’ flares on that, then it started pooping out, and then I got a constellation of symptoms that appear to have been the slow development of an adverse reaction to it. Now I’m on Cimzia, which (apart from the horrible cold I have!) is working better than either Humira or Enbrel.
Thing is, although I still worry about it pooping out (it’s a rare human who wouldn’t), I’ve been in the gap before, I’ll probably there again, and each time it happens, I get just a little better at coping with it.
You’ve got plenty of meds left to try, and you’ve been in the gap before. I’m not suggesting it’s something to look forward to, but you’ve done it once, so IF it happens, you can do it again. And just maybe, with all the wisdom and knowledge you got from the last time, it will be just a little easier I hope this is just a flare, but if it’s not, you can get through it, and we’ll be here to support you.
Thank you, all. I think I’m probably panicking - and a flare of bipolar and arthritis at the same time isn’t useful either! The dull ache in my chest if worrying me - although it doesn’t seem to be worrying the doctor - but I’m always concerned that we blame arthritis for everything and then find out one day it was something far more serious and we were complacent. It’s probably not, of course. But once that plays on my mind, it takes a lot to shift it. And once that starts, I’m Mr. Doom and Gloom for evermore! At least my knees are feeling more groovy today, so I’m hoping! x
Well, it’s only fair to come back and update. Things seem to be proving. The chest pain/ache is better but not gone completely. The book I’m writing at the moment involves much research of old newspapers, and I find that the more I pour over the small print, leaning forward as I do so, the chest ache will return. And it always seem to return with shoulder pain too. It’s also there if I lie on my right side in bed. But it’s Saturday, and I take the biologic on Sunday, so today is the worst day of the week for pain. And it’s better than it was a week or two back. Knees are easing up, too. I don’t like the fact that the PsA appears to have spread to new joints (shoulders, chest, back) and so will have to talk that over with the rheumy when I see her. But at least things are better than they were.
I have definitely hit walls with medications. Methotrexate did nothing for me, Humera, I still had bad flares constantly, usially at the end of 2 weeks after injection. Doc moved me enbrel, but had even worse fatige, if that seems possible, than without. Now, I take stelara. Took awhile to notice any improvements. But I definitely have them, now I am hitting the wall again. It’s been about a year now. So, I don’t know what the answer is, except I keep trying. I go to rheumatologist in November. Maybe an increase in Stelara, or a different med, but this has worked the best so far. I definitely have environmental triggers too. Didn’t think I did, but sleep, and anxiety are big ones for my PsA.
I hope this is just a flare, but if it’s not, you can get through it, and we’ll be here to support you.