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An Unusual Health Journey

Boy, after reading some of your stories I don’t feel like my story is so significant. When I started having real problems with my hands swelling and aching and my joints swelling and aching my doctor referred me to a rheumatologist. I had been to a rheumatologist many years before in my 20’s and had injections in my hands and in my hips and knees but no doctor ever mentioned that I might have a disease that affected these things. As I aged I just continued to have an injection in whatever joint or my hands whatever was causing me severe pain that time. Finally when I went to a rheumatologist about 8 years ago and he himself did an ultrasound of my hands and found lots of inflammation.
At first, he just prescribed Tramadol for my pain. As time went on and nothing seemed to get better he tried methotrexate. I hated that because I don’t do well trying to measure and inject myself. We tried Otezla which my insurance would not approve until he tried again but the copay was over $2,000 a month so we canceled that.
So my doctor said that since the insurance would not approve drugs he would order a procedure that they would approve. Hence the beginning of a year and half of Remicade infusions. That didn’t seem to be working so we switched to Enbrel weekly injections.
Tried that for about a year until my doctor left the practice and I moved to another city and wound up having to get a new doctor. It took me about 6 months before I could get an appointment with her. Since I had stopped the Enbrel when I moved and lost my doctor, I went for 6 months with no medication. Therefore when I finally got to see a new doctor, I was in really bad shape. She decided to start me on Humira. I was very fortunate that I was able to qualify for a patient assistance program with Humira and did not pay any copay for the medicine. After about a year or so that began not to do very well with my symptoms so we changed to Xeljanz which I am still taking now but I have some pretty bad flares. I have an appointment with my doctor next Friday and we will discuss where to go from here.
So that is my history of knowing that I have psoriatic arthritis. I do not have psoriasis and hope I never do but my doctors and information I read say that it still is a very serious condition without the psoriasis.
I have had many symptoms caused by PSA and it explains why I have had so many chronic medical problems over the years. When my family first read the article “Five Things I Took For Granted Before My Illness,” they were blown away. They could not understand why I would say I felt bad, etc., they were not sure I was not making it up. After they read this article, there were many “I’m Sorry’ comments from then on. My sister told me that she had no idea what I was going through and she treats me very different now. I have had to miss church an awful lot and I truly regret that. I already had so many issues before I was diagnosed so my health is really bad. I have had three surgeries on my spine and have peripheral neuropathy caused by a very serious surgery on my neck in 1997 and it damaged the sheath which protects the spinal cord. The neuropathy started at the tip of my toes and has not moved up to just under my knee in both legs so I have no feeling in both feet and legs. I can walk and use them; I just can’t feel anything so I have to be very careful where I step and never walk barefoot. Well, I could go on but I think this is enough to tell you about my story. Thanks for reading all this. Have a good day.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Eileen B moderator
    1 year ago

    You’ve been through a lot, @bbthodges. I’m so sorry your stress was increased by going undiagnosed for years. How did your appointment go last week? Don’t lose hope, many people do find “The One” treatment that truly helps. In fact, one of our longtime contributors just wrote about hers recently here, Fifth Time’s the Charm. I hope you find something that reduces your symptoms — and soon! Hugs. -Eileen, Team -Eileen, Team

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