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New to Forum: PsA diagnosis still not 100%

I'm excited to find this forum. Here's my intro: My extended family has auto-immune issues. My mother died from complications of lupus, 1 of my sisters has uveitis and PsA in her ankle, and my mother's sister had psoriasis as do 2 of her children.

For me, after being told for 10 years that the deformity in my hands was due to osteoarthritis, I was diagnosed with PsA 2 years ago. Because I have no psoriasis or history of it myself, the question has remained about whether I have PsA or Inflammatory Erosive Osteoarthritis. I have swan neck deformity in several of my fingers, but I also have hyperflexibility in my fingers (and hips) which could possibly account for the swan neck. The distal joints in my fingers are quite deformed at this point (curved and swollen and calcified). My toes are starting to curve. I have one obvious sausage finger.

I've been on MTX for 2 years and did a challenge a few months ago to see if I had the erosive osteo (not responsive to MTX) or PsA (responsive to MTX). My rheumatologist had me go off the MTX to see if it was indeed helping. If it helped, then it confirmed PsA. If I noticed no difference, then no PsA. Within 2 weeks I had a lot of discomfort in my hands so we agreed I had PsA. I've been having a painful flare the past month so am ready to move to a biologic. First, though, I'm in the screening phase of a clinical trial for biologic-naive patients. The question is whether they'll actually accept me into the study given that I have no psoriasis. Anyone else have trouble getting a definitive diagnosis because you don't have psoriasis? I look forward to hearing your stories.

  1. Welcome to the community, !! Great to have you here. It sounds like you have been on a real journey over the years. I am sorry to hear that you're currently flaring 🙁 Hopefully the clinical trial comes through and you're able to find some relief. Do you know when you'll get an answer as to whether you qualify for the trial?

    Regarding not having psoriasis, we have a couple of community discussions which I thought may be of interest:

    https://psoriatic-arthritis.com/topic/psa-without-psoriasis/
    https://psoriatic-arthritis.com/q-and-a/psa-diagnosis-without-psoriasis/

    I hope that these are helpful and of some comfort - you're definitely not alone in this. Sending gentle hugs!

    -Catherine, Community Moderator

    1. Fist bumps spread fewer germs, too, so you're protecting yourself doubly, Jennifer!

      -Martha
      Psoriatic-Arthritis.com Team

    2. Gosh yes I know a lot of our community members find handshakes particularly difficult. I am sure there was a lady who said that she does a sort of elbow bump with people now. That and fist bumps both sound like a good idea, especially with great point about germs from !!

      I'll be keeping my fingers crossed for you this week, Jennifer. Will you let us know when you hear?

  2. I remember when I found this group. Just know you are not alone in this. I am so sorry, I hope they find a medication that works for you!

    1. I had PsA for over 15 years and then suddenly started having inverse psoriasis at age 45! We didn't figure out the PsA until the rash showed up though so no treatment for all that time. Now I'm on Cosentyx 300mg. I really wish I could try Humira because it seems to be so effective for most people. I'm glad you got the right diagnosis early. Blessing and gentle hugs!

      1. Welcome. I was in similar situation with no psoriasis, but my new great doctor gave me the PsA diagnosis.Been in flare this month too.

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