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Out of the blue

My road to PsA has been a convoluted one without the hallmark signs typically suggesting psoriatic arthritis. Has anyone else had this happen & what did it take to finally get a diagnosis?

At 53 my scalp suddenly seemed to turn into molten lava overnight, the skin presenting as red and angry as it felt as nothing could calm the itch or pain. As it traveled down into my ears and crept towards my eyes, my family physician suggested a short-course, tapered dose of Prednisone to calm what we thought might be an allergic reaction.
It didn't.
Biopsies through dermatology suggested severe eczema. Only my scalp, ears and eyelids were impacted; albeit severely so. Over the next years we tried topicals, steroids, phototherapy and finally biologics. Methotrexate did nothing. Dupixent seemed to decrease the dermatitis some, but other areas were still red and incredibly painful.
Next we tried Humira and the dermatitis became more severe, so we switched to Stelara. My entire body became impacted by folliculitis and I lost most of my hair. The biologics and phototherapy were halted and I went on doxycycline and topicals while covering my skin with clothing, hats, gloves, etc. from head to toe after each application. After a week things improved, then improved some more, but never cleared.
One thing I did notice when I stopped the biologics, however, was the immediate return of joint pain. Everywhere. I hadn't even noticed the pain had ceased because I had been so focused on the dermatitis. Besides, I thought my joint pain was severe osteoarthritis. Apparently it was something more.
But it wasn't hallmark PsA. My hips only hurt at night, I did not have frequent back pain, only the great toe on my left foot hurt on occasion. But the impact of the biologics on decreasing my joint pain was incontrovertible. The return of the joint pain hit me hard. Each moment of each day was a crap shoot as to which joint would hurt, how badly and how long. It appeared to be classic rheumatological disease symptomatology, or so I had read.

We decided to try a jack inhibitor & if that did not calm my joints along with what had now been diagnosed as psoriasis (along with continued eczema), then I would see a rheumatologist.
The problem with biologics is that they can take months to kick in. This is why finding the right medication is such an arduous and depressing journey.
After several months on Rinvoq with only some relief, I was seen by rheumatology. I was told that a mixed bag of psoriasis with eczema like I have is quite uncommon; as is my presentation of PsA. But PsA it is and I should give the Rinvoq a little more time. I am about ready to try a new biologic as I am still battling all of my symptoms, just not on the crisis level I have been in the past.

Has anyone achieved remission where this isn't a daily battle?

  1. Hi , it seems like you've been through an awful lot. I hope others will be able to share their experiences with you as well. Unfortunately, there can be a lot of trial and error. Many have also had very long roads to a diagnosis. I hope some may share their stories with you, you can also browse through some of these articles, stories, and forums: https://psoriatic-arthritis.com/search?s=diagnosis. It is true that it can take months for a treatment to start working. I hope you will find something that gives you more relief. Some people have been able to reach remission. You may be interested in looking at some of these articles: https://psoriatic-arthritis.com/search?s=remission. Please keep us updated on how things are going. Sending gentle hugs, Minel (Team member)

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