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Newly diagnosed with PsA

Hi all. After years of chronic pain and fatigue, and about a year of testing and confusion, I was finally diagnosed as having PsA three days ago.

A little history: Years ago when I started experiencing lower back pain, I had an MRI that led to a diagnosis of Degenerative Disk Disease. My primary doctor referred me to a neurologist/spinal surgeon to see what could be done. Since the degeneration hadn’t progressed further than my lumbar spine, the surgeon said that surgery wasn’t a good option and that I should try massage (ok), PT (expensive), exercise (yeah right OUCH), Rx pain meds (opioids no thanks), or cortisone injections (big nope). Needless to say, I lived with the pain as best as I could.

Then last year things started to get worse. Not only was my back pain more pronounced and radiating further up my spine, but I also started having weird symptoms popping up—my fingertips were completely numb, my shoulders started hurting to the point I lost range of motion, my legs would feel like I had ice water droplets on them, and I started feeling full body aches like I had the flu.

Since I’m also Type 2, my primary was first concerned with neuropathy in my extremities. I had a nerve conduction study done on my hands which concluded that I had carpal tunnel in one hand but otherwise no other nerve damage. At the time my A1c was high but not too high, so my primary ordered a series of tests to check for rheumatoid factor, C-reactive protein, Lyme disease, and a few other things. All of these came back negative. He eventually referred me to a rheumatologist.

The rheum did the usual—asked me about my symptoms, checked pressure points, etc. He had me do the steroid test (I felt GREAT for five days), and ran bloodwork to check for inflammatory markers and the HLA B27 gene. The inflammatory markers came back negative, but the genetic test was POSITIVE!

When I went in this past week, I wasn’t expecting a diagnosis but I was floored when he said he was confident that I had PsA. So now I’m on Sulfasalazine and Celebrex.

I know it will take some time for the Sulfasalazine to kick in, but I was wondering if anyone could share their experience with this medication. So far my body seems to be tolerating it (aside from my immune system which is hell bent on fighting back if my sudden flare up today is any indication). Has anyone had that happen when starting this med? How long did it take for it to start working? Are there any strange side effects I should know about? Has anyone had any issues taking it with Type 2?

I know I have a lot of questions, but since I’m on a cocktail of other meds for diabetes, anxiety, and high BP I’m a little nervous adding two more to the mix.

K

  1. Hi , a big welcome to the community. How are you feeling with all this news? A little overwhelmed? It's certainly a lot to process, but we have a great community here and lots of resources. Feel free to share your question here as well: psoriatic-arthritis.com/q-and-a
    I haven't personally tried sulfasalazine, but I know many here have so hopefully they can weigh in.
    Thinking about you,
    -Victoria, Community Moderator

    1. I've been on Sulfasalazine for about 4 months due to continual inflammation in my ankle from a torn ligament. I haven't seen any big changes from it. They put me on Methotrexate 5 weeks ago. Still not any big changes. Luckily, no major side effects. I feel like I'm taking candy.....I see dr again on Dec 17 when he's mentioned giving me shots of embrel. This has been going on for a year. I haven't had the blood work that you mentioned. Interesting and I'll check with my dr about that. My pharmacist has been wonderful explaining all the new meds. Good luck and hope you have results!

      1. Hi K,

        How are you going with the sulfasalazine? I started on it two weeks ago, and I'm having some unpleasant side effects: headaches, nausea, and extreme fatigue - the latter occurred when I increased the dosage in week two. The doctor has reduced the dosage and we're going to try introducing it a little slower to give my body time to build tolerance. She explained that it didn't work out for some people - so maybe I'm one of those. What's been your experience?

        Francesca

        1. Hi!! I was diagnosed last week also after yrs of chronic pain and struggle. I don't have advice for you on treatment yet unfortunately, but I'm here to support. We got this. 💪

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