I’m very frustrated right now and I feel like my situation doesn’t even make sense. I’m also really scared.
I was diagnosed with PsA in February. Started Humira in March. It was a miracle drug for about 4 weeks. Then it seemed to completely stop working. My rheumy called it a failure in May and switched me to Enbrel.
Felt significantly better in the first week. By the second week, I was at 80% improvement. Now I’m in week 3 and it’s almost as if my last injection was a placebo. Now I’m at about 20% improvement, and each day seems to be slipping more.
I don’t get this at all. Is it really possible to have an initial fantastic response only to then fail almost immediately?
I’ve tried to research this online, but haven’t found anything. I don’t see my rheumy again until 2 months out. Should I be patient and give this more time? Do I call and see if I can get in ASAP?
At this rate, I will burn through all possible meds pretty quickly and that petrifies me.
Hi pepperdine,
Wow, biologics work so differently for everybody, but I don’t recall too many other people who have such quick improvement from Enbrel or Humira only for it to fizzle out after a few weeks. I was lucky to have quick results from Enbrel and it’s still working 3 years later. Most people have a more delayed response–maybe you should hang in there with Enbrel and hopefully it will work eventually! My doctor started me out on two 50mg shots of Enbrel per week for the first three months. I’m not sure if that’s why it worked so well or not, but my best results from Enbrel were in the first weeks. It’s still working, and I’d like to say at about 75% effectiveness.
Where do you give your injection? Do you put it in the fat of your stomach? It’s very important it gets injected into fat. (I’m sure you already know that.) But, I didn’t know it mattered until my daughter (a nurse) told me. It seems the doctors at the clinic forget to mention some of the important details.
I hope this is just a slump and a flare-up of your PsA and you start feeling better soon!
Like Grandma_J I’m surprised that you were advised to quite Humira after such a short time. I think I probably got quite an early response, the swollen joints fell into line pretty quickly, but by early I mean after about 6 weeks. Thereafter fatigue and pain and so on improved little by little. And I reckon that’s quite a common timescale.
I’d recommend patience. Almost sounds as if the fantastic early response has thrown you a little, as it would me if I then felt a whole lot worse. Flares do happen while on biologics, I frequently think it’s all going to hell in a handcart but my flares so far have been very minor in retrospect. Also, very unscientifically, bodies are just weird. Or at least that is how it seems to me as a patient. Best to factor in some weirdness with PsA!! If you’re really struggling then best to contact your rheumy. But I’m still scratching my head over how quickly poor ol’ Humira was dismissed!
I would give it time. I’m guessing that the first shot or two was actually the placebo effect, and now you just need to wait for it to get started working. It took probably 2 or 3 months for me to realize that I was actually seeing a difference in how I was doing.
Yes, Pepperdine I SO get it. I have the very same fear. And then what?
However, there are new treatments coming online every year, and not all of them are the injectable biologic type. Let’s hope that you don’t have to go through too many to get to your next "island"of remission.
But yes, of course it’s a fear: the thought of returning to the way I was before biologics leaves me shuddering.
I’m still learning this disease, so I’m not entirely sure what a flare is vs just my normal disease activity. Aside from the few weeks that humira worked and the 2 weeks that enbrel worked, I haven’t had any significant improvement in the pain. I’ve had random days be better or worse than others, but no stretch of days that was better.
In other words, I’m wondering if I’m been in the same flare since this all started back in December/January…just at varying degrees. Is that possible? Can a flare be 6 months long? (please excuse my ignorance)
Also, I did have a thought that maybe I created this a little bit myself - I did a short session of exercise Wednesday night, which is not normally like me. But I was feeling great and wanted to move! I kind of danced around for about 20 minutes…is it possible that would create what I am experiencing?
A flare certainly can last for 6 months. There again, the fact that you enjoyed dancing for 20 minutes suggests there’s got to be hope! I wouldn’t have thought it would do you any harm but it’s difficult to say. There again, maybe slightly less full-on exercise, very regularly, might help quite a bit over time, exercise is one of the key weapons in our armoury.
It must be really confusing for you having started biologics so promptly only to find that they haven’t yet helped. But don’t give up, the early days (and it is still early days) are often the hardest. I would definitely recommend gentle exercise as part of the ‘treatment’ though … exercise can seriously help with pain though you might need to acclimatise, it might make you feel a bit worse at first. I’m so hoping we’ll hear that you’ve turned a corner before too long.
