My PsA Journey: 8 Years and Counting

I have never shared my story on this or any site for that matter. Have been battling PsA for about 8 years although struggled with finding a diagnosis for the first five years And was finally diagnosed about three years ago.

My initial symptoms

First extreme foot, heel, and achilles inflammation, then hips and shoulders and sometimes all joints, but my feet are the main issue. After years and years of misdiagnosis, surgeries, and injections, I finally went to Mayo Clinic for first opinion and Hopkins for a second opinion. PsA/Spondyarthritis with enthesitis inflammation in tendons and ligaments. Diagnosis was confirmed as I finally had psoriasis break out in between trying biologics.

Biologic treatment for psoriatic arthritis

Good segue...So I have been on the biologic roller coaster for three years now. Humira didn’t work, stelara didn’t work, xeljanz finally works and takes away about 75% of my pain for the first time in 6 years but my liver enzymes tested too high from a side effect from the xeljanz and they have to take me off it. Devastating. Then 1 cosentyx injection for three months with no improvement. Then two cosentyx injections, which reduced pain a little bit but not enough to sit at a kids sporting event without pain management and not enough for a decent quality of life. Then got approved for two cosentyx injections every three weeks. Which brings us to this past week. Another huge flare, probably the culmination of a nonstop flare that has been going on all summer. Sooo...back to the drawing board.

My ongoing treatment journey

They are now recommending I stop cosentyx altogether and start on RinvoQ. I’m 43 married and I have three teenage daughters and went from doing olympic triathlons and being very active ten years ago to not being able to get out of bed many days. Any bit of energy I have I use on doing my job which is not manual labor but the pain is making my ability to concentrate very hard at work and the energy just isn’t there. Wanted to share my story so that if anyone else is going through something similar, you are not alone. Also starting to question if I will ever get any decent quality of life back or even a day now and then without pain. My expectations are not high. Looking for manageable pain, and the ability to walk a couple of miles without paying for it for the next week or maybe playing nine holes of golf here and there. Be able to have the energy for work and family and not have to choose. If there are any others out there with a similar story that has a brighter ending I would love to hear from you right now as I can use some hope.

Thanks in advance.