I’m a 42 year old female. I was newly diagnosed with PSA in February. My symptoms started very suddenly one day in December - initially just pain in hands, but very quickly spread to wrists, elbows, ankles, etc etc. And so very tired all the time.
Saw a rheumy the end of February and he put me on Humira. I had very elevated liver levels at the time, so he skipped over the DMARDs. (liver issue is resolving and seems to be unrelated)
I also take Celebrex everyday for pain.
My first 3 weeks on Humira were miraculous. I went from constant pain and fatigue to virtually no pain and very little fatigue. I felt fantastic. I had been very scared by my diagnosis and what this meant for my life, so the Humira was a God-send!
Last week (tail end of 2nd Humira dose), I started to get pain again. Nothing like I had before Humira, but still concerning. Also started to get that flu-like feeling again - tired, achy, etc.
I figured it was just that the Humira wasn’t exactly lasting the full 2 weeks and thought this would resolve itself once I gave myself the shot Thursday night. It didn’t. It hasn’t gotten worse from that level, but it hasn’t gotten better.
So now I’m worried that there’s just an extremely short honeymoon period on Humira and now that’s over.
Has anyone else experienced this? Was my initial result just a placebo effect?
I went from devastated by my diagnosis to ecstatic by my improvement to now not knowing what to think.
Just wondering what everyone else experienced with Humira…
Congratulations on speedy progress to biologics! (But of course sorry you needed them in the first place).
The only thing that occurs to me is that immediate relief from Humira seems unusual. For most of us it takes at least a couple of months to show what it can do. So it could be that you had a respite from symptoms that was unrelated to Humira, PsA can ease up for a while quite suddenly all on its own, or that for some reason you got an early ‘free gift’ from the drug.
So with luck you might just have had a glimpse of what the future holds, hopefully the near future! As for the placebo effect, well, I’m sure PsA affects my body and my mind … and vice versa. The relief of getting started on what can be a very good drug may possibly have alleviated stress to such an extent that your physical symptoms decreased too, for a while anyway.
All of this must be very disconcerting. But hang on in there, there’s still time for a very positive and more lasting result.
I agree with Sybil, it’s probably a combination of things…first, you suddenly got symptoms in December, which isn’t all that long ago. It seems you were in a major flare. I think starting the Humira might have coincided with the flare subsiding a bit on its own along with other factors. I’m on Enbrel and everybody was sort of shocked when the Enbrel started working for me almost immediately–I had that flu-like ishy feeling too–that and the fatigue and widespread achiness started going away in a day or two! It’s uncommon, but a few other people on this site have said they had really fast improvement with their biologic, also.
I’m wondering if maybe you’re fighting off an illness–cold, flu or whatever–I can imagine that might make you feel as if the PsA symptoms are coming back!
I think Humira will continue to do its magic and you’ll notice improvement again. There are some ups and downs, and that might be flares getting in the way of complete Humira coverage 100% of the time, but 80% isn’t bad!
Certainly I got relief from Humira in about a month, but for me that was 5 shots (loading dose method used for concomitant IBD).
Certainly with both Enbrel and Humira, for me there was fairly quick relief, but I seemed to keep lapsing back into flares quite frequently until I had been on them (respectively) for about 4 and 6 months. Most people who lose effectiveness properly develop antibodies to the drug, which usually takes quite a bit longer, so remember it is usually it is two steps forward and one back.
3? Years on from my first shot of Humira, my flares are less frequent and less severe, so here’s hoping you have a similar experience
Thanks everyone for your thoughts on this. I am beginning to realize that part of dealing with this disease is understanding the ups and downs and managing expectations.
Yes - I remember when I first had a that realisation I wasn’t actually that impressed - still very young and impatient (in my mind at least!), though over time I came to realise that the better I get at it, the more control I can (feel like) I have over what is a very unpredictable disease at times!
I never feel perfect anymore, but all I have to do is remind myself how shi**y I felt until I started Enbrel…it’s actually hard to realize how bad it was, but I know it was terrible. I honestly don’t think I could take it if it came back!
