PsA Plus More

When I was 30 years old, I had developed what I thought was a bad case of dandruff. It peeled and bled and nothing I used was making it go away. At the same time, I started having very swollen knees, severe foot pain, and excruciating pain in my right hip that I thought was probably a sciatic nerve problem. At that time, I did not see any connection between my scalp and my pains.

Getting a psoriatic arthritis diagnosis

I made an appointment with a dermatologist who saw me struggling to walk down the hall to his examining room. He asked why I was walking that way and I told him I didn't know but had scheduled an appointment with a rheumatologist for a few months later.

I had already been to an orthopedist who drained fluid from my knees but never tested for anything. When the dermatologist looked at my scalp, he said, "I know why you are in so much pain. You have psoriatic arthritis. This is psoriasis on your head. Make sure you tell the rheumatologist this because you don't have psoriasis anywhere he will easily see and make the connection."

Fast forward two months and I go for my appointment with the rheumatologist. After assessing my symptoms, listening to my results from the dermatologist, and running bloodwork, my rheumatologist diagnosed me with psoriatic arthritis. This diagnosis was before the advent of biologics so I was started on high doses of prednisone, methotrexate, Vioxx (twice the normal dose), and Arava.

Treatment side effects and outcomes

Aside from the "lovely" side effects of the prednisone, my doctor was able to get my pain under control and was also able to stave off any more joint damage. The prednisone was dropped after ten months (ten months of hell for my family as I was moody and ballooned in size). I was able to remain on the methotrexate, Vioxx, and the Arava for about two years before my liver functions started going south. I went off the Vioxx first as I was beginning to throw up stomach acid frequently. It wouldn't be much longer before Vioxx was taken off the market with connections to strokes and deaths.

Finding the right treatment

Then along came Humira! A miracle drug for me! At the time, Humira had not been FDA approved for PsA, only for RA. As a result, my insurance did not want to cover it ($1800/month). My doctor then put a more generic diagnosis in my file that passed the test of insurance coverage. When we agreed on this course of treatment, I was advised that it would probably take 2-3 months before I noticed a difference. When I took my first shot, it felt like a flame went up to my spine--not in a painful way, but more like a signal from the drug saying, "Thanks for inviting me!" I felt a difference in my pain and mobility in two weeks! Humira literally saved my life!

I was able to come off of everything else. Humira, 2x/month, worked for me for several years. Near the end of my 40s, we had to up it to 4x/month. I had also switched from Humira, briefly, to Cosyntex which had a very adverse effect on my SED rate--catapulting in two months from the mid-30s to 95! After that, I went back on Humira (the newer one that is citrate-free--Hallelujah!! No more fire in the belly region!) but still at the 4x/month dose.

Additional comorbidities

By then, I had also developed a few other autoimmune disorders – Sweet's Syndrome and enthesitis. Sweet's syndrome is a skin disorder that was making the skin on my hands burn so badly that I couldn't even put my hands in my pockets. None of the creams my new-at-that-time dermatologist seemed to help. Strictly by coincidence, I woke one morning with hives on my arms. I looked up online the best OTC treatment for hives. The most frequent hit was Zyrtec. So, I went to the store and bought some. Not only did it take the hives away, but it also cleared up the Sweet's Syndrome! Now I take that daily to keep that from coming back.

The most recent issue I have dealt with started in December 2019. I started developing blood blisters on my right foot. They would be there for a while, then they would fade away. Then they would return, spreading farther along my foot. Every time it flared, it spread until it was on both feet.

Seeking a second opinion

My dermatologist misdiagnosed it as vasculitis. It continued to get worse to the point that I couldn't find shoes that I could wear that didn't touch and rub those blood blisters. I started searching, again, online for a doctor who could help me. I finally entered "autoimmune dermatologist" into the search bar. Up popped a doctor at one of the teaching hospitals less than an hour from my home!

I made the appointment which was in July 2020. As I sat in the examining room, the doctor walked in and said, "I hear we have a problem with your feet?" I said, "My hope is that you will look at my feet, say, 'This is no big deal. I've seen this before.'" He looked at my feet and said, "This is no big deal, I have seen this before."

I was diagnosed with palmoplantar pustulosis. Because of some consistent increases in my SED rate, my rheumatologist had added back methotrexate to my weekly routine. The Rock Star dermatologist said that is what he would've prescribed for the PPP. Since I'd only been back on methotrexate for just a couple of weeks, it had not had time to have an impact on the blisters. He told me in about eight weeks, I'd see a difference. In eight weeks, they were nearly gone!

A long journey

My autoimmune journey seems like the ride that never stops and that will never let me off. However, I find celebrations every now and then. I have recently retired from my job as an elementary school principal. While the students and staff were amazing, there was a great deal of stress that accompanied the job. The rise in SED rate levels coincides with my move from the classroom to administration. I've got the data to prove it. So, now I can do what I can do, rest when I feel the need, and move at a pace that changes with the ebb and flow of my many autoimmune issues. The picture I'm attaching is of the PPP on my feet.