Amberlee's Psoriatic Arthritis Journey With Biologics
Amberlee Barricklow started on biologics in 2011, the same year she was diagnosed with psoriatic arthritis. The diagnosis came after almost eight years of severe psoriasis and three years of joint pain. Like many psoriasis and psoriatic-arthritis patients, Amberlee spent many years trying to find which biologic worked best for her.
Amberlee offered to share her experiences with HealthCentral readers who may be thinking of trying biologics to control their psoriatic arthritis and psoriasis.
Q: What were your initial feelings when you were diagnosed?
Amberlee Barricklow (AB): I was afraid, angry, and relieved all at the same time. It was so good to finally have a diagnosis and a doctor who listened. I was afraid that I would be permanently disabled and unable to care for my two young children. I was angry that I had been misdiagnosed, and had been told my joints hurt because I was “fat,” and that my severe psoriasis was no big deal. (Someone told me to “Stop being vain.”) I cannot tell you how much it meant for a doctor to say, “This is not normal” and “I will be with you on this journey, to fight with you for a better quality of life.”
Q: How did you first treat your psoriatic arthritis?
AB: My psoriatic arthritis (PsA) and psoriasis were quite progressed, so I immediately started on Enbrel in combination with different topical steroids to reduce the skin pain and itching.
Q: What has been your experience with biologics?
AB: When I started Enbrel, I finally had some relief from both PsA and psoriasis. It took two weeks to feel Enbrel start working, and it made me realize how numb I had become to the amount of pain impacting my life. After several months, my skin was almost clear, my joint pain and swelling had been reduced by half, and I felt great. However, after a year, the joint pain returned and I began to experience more skin flares in new spots on my body. I was able to control the skin flares with topical steroids, but the joint pain continued to worsen and made it extremely difficult to walk, use my hands, and sleep.
My doctor then switched me to Humira. I was on it for a year with good results, but then I started to have significant joint pain and flares. We continued Humira, but added Methotrexate to see if that helped. The side effects of Methotrexate were horrible for me. After three months, I stopped taking it, and continued with just Humira.
During this period, I was exposed to tuberculosis (TB) and tested positive on what they call the “gold” blood test. I did not realize how easy it was to get so sick with a compromised immune system. I had to terminate PsA treatment and was told that I had to begin treatment for TB. I had a hand biopsy to determine if TB had settled in my extremities, and began four months of treatment, with antibiotics. The pain was horrific. I was unable to walk most days, and the TB medicine made me nauseous. Halfway through treatment, the results came back negative for TB, but I was mandated to finish regardless.
Upon completion, I restarted Humira. At this point my PsA was worse than when I was first diagnosed, so Humira was absolutely ineffective. Otezla had just become available, so my doctor and I decided that would be our next step. After the dosing stage, I was able to take it for three months. The side effects were so difficult for me. I had headaches, diarrhea, nausea, with little to no change in my PsA.
I held out until we could try Cosentyx. Finally, I found a biologic that has worked the best and longest for me. It has been the most effective medication for both PsA and psoriasis. After a year and a half on Cosentyx, I also started to see a naturopath. I was also diagnosed with Hashimoto’s Disease and started medication for that. I felt the best I have ever felt since my 20s.
I have been on Cosentyx for over two years now, and am just now having more flares and joint swelling. However, ongoing lifestyle changes (diet, exercise) and stress management really help on the hard days.
Q: Can you talk more about your lifestyle adjustments?
AB: Diet changes have been so helpful and seeing a naturopath who tailors my health plan for me has been tremendous. I drink two green smoothies daily, and would characterize my diet as gluten-light, low-sugar. I would love to incorporate yoga, but am unsure of where to start. I still have hard days with limited mobility, so I chicken out and am afraid to start. The best I have felt since being diagnosed was on our trip to Europe this year. The combination of healthy food, relaxation, fresh air, and exercise made me feel amazing. I am striving to do that here at home. One day at a time.
Q: If you could go back and offer advice to yourself when you were diagnosed, what would it be?
AB: I would tell myself that this diagnosis doesn't define me. It hasn't written my future. It is still so easy in the midst of chronic pain and mobility loss to get so discouraged, believing that my life will always be pain, struggle, or filled with “what I can’t do.” I didn't realize how much of a mental battle chronic pain would be, and how hard it would be for others to understand a disease they cannot always see.
I would encourage myself to seek out others fighting the same fight sooner. Here I am pretty far into this journey, and I just now have come to terms with the fact that I need support and to be supportive. It is easy to hibernate and try to struggle through on your own, but it has made such a difference for me to read and connect with other patients living with the same highs and lows of this disease.
Like you always say, Julie, it's a bad day, not a bad life...and I now know that you need someone else in the same boat to remind you of that truth on those bad days.
I couldn’t agree more with Amberlee! We have to take each day as it comes and realize we’re all going to have bad days. But just because we have bad days, it doesn’t mean we have a bad life.
Sure, it may take us a few tries before we find the correct medication. Or perhaps it may take us a few doctors before we find the perfect one. But, in the end, we have to be empowered to always seek out the best care for ourselves and to try to live our best lives possible.
Thank you to Amberlee for sharing her journey. She joins many other psoriatic arthritis patients, like Michelle and Jen, who speak up about their own experiences to help others out there going through the same challenges.