40 Years and Counting...

Last updated: May 2017

My name is Diane, and I was diagnosed with psoriasis nearly 40 years ago when I was 16 years old. I used topical corticosteroids and had steroid injections and UV light treatments throughout my life with each flare-up. I was diagnosed with PsA (psoriatic arthritis) nearly a decade ago. At that time, my skin cleared up right before my PsA diagnosis, and I thought that it was gone! Little did I know, in 2010, i became ill with fever for a few weeks, and my blood work revealed that my liver enzymes were through the roof. My doctor tested me for hepatitis, and other things, and just decided that it was "some kind of infection that settled in my liver". He didn't do a liver biopsy at that time and forgot about it because everything eventually resolved.

Enter PsA

I believe this was my first PsA flare-up. I've had hypertension since 31 years old, and my doctor couldn't explain it because I am thin, I eat well and don't fit the usual description of someone with hypertension. I'm no doctor but I think there is a connection. A year later I was diagnosed with PsA. The psoriasis changed direction and decided to attack my joints, ligaments, and muscles in the form of PsA. I used Enbrel for a year and a half and had a severe flare-up while on it three years ago after my mom died. The PsA decided it wanted to kill me, via my organs, so I flared really badly. It began with a fever for two weeks so I had blood drawn. It revealed that my kidneys failed, my liver became enlarged with my liver enzymes shooting through the roof again, and my spleen was enlarged and affected too.

I was at work, at my desk when I got the call to go to the ER. I'm a tough girl, and usually just carry on even when I'm sick or in pain. I had two hospital admissions that summer and spent the entire summer in the hospital. I had to take high doses of prednisone for three years. I started Remicade infusions every four weeks along with methotrexate once a week this past February and I am doing well. I still have a lot of pain in my sacroiliac joint radiating throughout my pelvis into my left hip. My feet are bad too. I need a fusion on my neck and that should stop the shoulder and arm pain, and hand numbness I hope.

Getting relief

It's a daily struggle but my pain is better with the Remicade increase. She doubled the methotrexate and my skin is now clear, but I still get that creepy crawly feeling under my skin, nerve pain, and severe itching in the tops of my feet, which sometimes erupts into a blister of some sort. Crazy stuff. Every joint is involved at one time or another. I became disabled with this three years ago when I turned 50 and lost my job because of it. That was the worst part of this whole thing. I loved my job and my life.

I am getting better, and I think I'm just about in remission! I'm having trouble dealing with this life changing experience but for the most part, I am upbeat and focus on my children and granddaughter. It's a struggle every day.

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