Hi everyone. First, I’d like to say how grateful I am that I found this site! I’ll try not to ramble.
I’m 57. I have 1 daughter, and 2 granddaughters. I’ve been remarried for 4-1/2 years to a great, understanding man. I live in the beautiful Black Hills of South Dakota, 15 minutes from Mount Rushmore.
Psoriasis is on my Mom’s side of the family, but I’d never known a family member to have Psa. I was diagnosed at the age of 14 (1974), and was immediately put on Prednisone which helped somewhat to clear my skin, but it would get real bad again whenever I stopped taking the steroids. Over about the next 5 years, I was diagnosed with Gout among other things, and in my early 20’s, and because of where my foot pain was located, I was diagnosed with PsA, which was, of course, years before biologics came into play.
Fast forward to 1986/1987, my skin cleared to about 20% covered during my pregnancy. After my daughter was delivered by emergency C-section, my plaque returned with a vengeance and I started having kidney stones.
In the 90’s I was worked up at UIC-Chicago for a psoriasis sibling study, and was 70% covered in lesions. I wasn’t able to participate in the study because I was still capable of bearing children.
I also have PMDD (it’s like PMS, 365 days a year). Within about 5 years of stopping oral contraceptives, my skin was 100% clear of plaque. I had moved from IL to CA, had new insurance, new doctors, and received the Depo shot for my PMDD. My lesions came back with a vengeance and I was started on Enbrel 50 mg twice a week. This was about 10 years ago.
5 years ago, I started having debilitating back pain for which I’ve had injections, radio-frequency ablation, epidural, and nothing helps. I’m on opiods and probably will be forever, but that only makes my pain even barely tolerable at times.
3 years ago, because of different symptoms I was having, my primary care doctor was working me up for Lupus and referred me to a rheumatologist. Turns out, I didn’t have Lupus. The symptoms I was experiencing was determined to be that the Enbrel had become ineffective after so many years. I can’t imagine how much worse off I’d be today if I’d never been on Enbrel. Ive tried Methotrexate, Plaquenil, tried Humira which didn’t work at all, then eventually went to Remicade infusions, first every 8 weeks, then changed to every 6 weeks. It didn’t seem to help much and my care team and I decided to give it 2 years, and i also take 1 DMARDS, Sulfasalizine, and Leflunomide. I ended up discontinuing the Remicade this past October, as I had surgery coming up. I’m now also on Cosentyx.
3-4 years ago many of my tendons started decaying, because of the PsA. I’ve had rotator cuff and long bicep tendon surgery, TENEX for gluteal tendonitis , hip surgery for trochanteric bursitis, joint and torn tendon, right hand DeQuervians tendon repair and trigger finger release. All with the past 27 months. I still need the other hand surgery, a spinal fusion, and possibly parathyroid surgery. Also, I was diagnosed with Dupuytren Disease in March and have very painful hands and fingers 24/7.
I am blessed that I have a very knowledgeable, empathetic care team that LISTENS to what my body is saying. Also, my family and friends (the few that stuck around) are a blessing. I’m trying so hard to keep positive and to keep negative people out of my lfe. It’s a daily struggle. I did file for disability and was approved for SSDI within 5 months.
If my story can help even ONE person, then my suffering is not for naught. I’m happy to answer any questions anyone may have. Thanks for reading my saga.
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