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Has anyone ever been misdiagnosed because treatment just isn’t working?

Hi Everyone! I took be about 6 years to get diagnosed and I have been on treatment for 2 years. I started out with Sulfazalazine and found out I was allergic. I tried Otezla and the nausea and diarrhea never stopped. Tried Taltz and that was painful but no relief. I tried Humira and felt amazing! But after a few months I had a flare that lasted for 6 weeks. Doctor gave me prednisone and diclofenac but it just seemed to make things worst. I am now on skyrizi and it’s not the best but it’s okay. Minor flares every so often. But my new doctor thinks that because treatment doesn’t seem to be working, that I may have been diagnosed and I have fibromyalgia because he can’t see the swelling I’m talking about. Has anyone else received a misdiagnosis?

  1. Hi welcome to our community. We are happy you are here. Your question really is an open ended question in that most of us here have been misdiagnosed. Instead of being misdiagnosed with psoriatic arthritis we were misdiagnosed with everything else instead. The issue with Otezla you spoke about has been an issue for many others as well. Taltz by all indication is painful to take. If you got results from Humira and was feeling great may I ask why you are no longer taking it? It is a real struggle to find the one thing that works perfectly to control the PsA. You just have to keep looking for it. I am sure our great community will have more to say about this all. Vickie W., Team Member

    1. Never received a misdiagnosis, but it's not uncommon for a drug to work only so-so, or not at all. My first biologic was Enbrel, and like you on Humira, it was terrific until it failed. I was on Taltz for several weeks, and then two weeks after my first COVID jab, I experienced one of the worst flares I've ever had, so I was taken off of it, as my rheumatologist felt it wouldn't work. And throughout the duration of my time on Cosentyx, I still had to supplement with Prednisone for flares. I'm now on Skyrizi, and though it hasn't been "the best", I've experienced no flares, I'm off the Prednisone, and my disease activity has remained relatively low. I do have stiffness in all of my finger joints, but no real pain. And no apparent swelling. My rheumatologist thinks this could simply be a side effect of the Skyrizi. Here's the deal with biologics; your body can develop anti-bodies against them (immunogenicity). And, once your body has developed anti-bodies to one biologic, it's likely to do so with another. Abbvie has even stated on their own website that immunogenicity was a common (at 24%of patients) reaction to Skyrizi. And, studies have shown that the greater the adverse reactions are to a given biologic, the more likely the patient is to develop immunogenicity. It is an unfortunate downside to these drugs. I've been on Skyrizi for going on a year now, and I'm still not sure if it's working, or if my PsA has simply gone into a state of low activity all on its own, as it has done periodically in the past. And truthfully, I did fine for years with nothing more than Mobic, and then Prednisone for the occasional flare. But the flares came more and more often, and with greater intensity. But my rheumatologist has agreed to keep me on it for as long as Abbvie continues to keep me enrolled in their PAP, and I get it at no cost. As for your new doctor; you let them know you wish to continue on the current treatment plan until such time as it completely fails. And then, if this doctor wants to diagnose you with fibromyalgia, it might be time to move on from them.

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