Community Views: The Treatment Fatigue of Psoriatic Arthritis
Treatment fatigue with psoriatic arthritis (PsA) can be incredibly stressful. Not only can it sometimes take a long time to receive a PsA diagnosis, but finding a treatment that works can also take quite a long time. Staying the course throughout all the trial and error demands mental, emotional, and physical strength to keep going.
The impact of treatment fatigue
Treatment is an added frustration when managing life with psoriatic arthritis. Treatment options can be overwhelming, finally choosing a treatment can bring feelings of hope and fear, and having to begin again after another treatment stops working can be heartbreaking.
To hear more about community members’ experiences, we reached out to followers of our Facebook page. We asked members, “Have you ever heard of treatment fatigue? Describe your experience trying different treatment options for PsA.”
More than 70 community members responded. Here is what was shared:
It makes sense that feelings of frustration would arise after trying multiple medicines without finding relief. Some community members did not even get as far as receiving a diagnosis and prescription since their doctors did not believe them. Or they faced doctors who assumed their symptoms were something else. All of these situations can be challenging to deal with.
“The frustration of being told treatment could take months to work, but then does not work.”
“It is frustrating waiting months to find out something does not work or seeing improvement, and it plateaus short of the expected result.”
Are you frustrated with your current treatment plan?
Losing trust in doctors
After working with 1 or several doctors without experiencing any results, it is natural to start wondering if doctors have the answers you need. Many community members shared that it takes many attempts to find the right doctor who listens and is able to prescribe the right medicine. For some, it meant working with a dermatologist, not a rheumatologist.
“It took me months to learn to trust my current rheumatologist.”
“I had some awful rheumatologists who were dismissive of my pain and issues. One tried to blame all of my pain on a slipped disc.”
Do you feel comfortable talking with your doctor about treatment options?
Along with losing trust in doctors, sometimes it happens that we lose trust in the whole process. After several medicines do not provide relief and the pain is still there, it can be hard to want to keep going. It can be a challenge to tap into the hope that things will get better.
For some, it helps to step away from doctor visits for a while and connect with others who have PsA. Finding a community where you can learn more about what works for others with PsA and vent to people who understand this journey can be incredibly helpful and comforting.
“Becoming increasingly pessimistic toward doctors because my symptoms were dismissed too often.”
“Any time a doctor would present me with some new drug that works so great, my first thought is ‘Yeah, OK. We will see.’ Because nothing has ever worked for me as it was supposed to, and they are left scratching their heads.”
Has PsA treatment fatigue given you a negative outlook on life?
Fear is often a big part of the process, from diagnosis to finding what works. It is natural to be scared that you may never find a treatment that works. Fear is stress, and stress is hard on the body. If you are feeling this way, it might be worth talking about with your doctor.
You may also find some comfort in talking to a therapist. This journey is both physical and emotional, and it is OK to ask for and receive help in handling the fear and stress of it all.
“I have a bad reaction to everything I try. I am scared to try the next medicine.”
“I was afraid of the cost of what was prescribed.”
Do you let fear stop you from trying new treatment options?
For many in this community, hope can be found by talking to and connecting with others on this same journey with PsA. To know that others have had the same treatment fatigue and have come out the other side happier and healthier can be a huge relief – and provide the inspiration to keep going.
“I stick with what works the best. I adapt, and I manage it.”
“This gives me hope.”
Does connecting with others who also live with PsA allow you to remain hopeful?
Experiencing daily pain, facing stigma, and the impact on mental health, treatment is just one more frustration to managing life with psoriatic arthritis.
We want to say thank you to everyone in the psoriatic arthritis community who shared what is working for them. We appreciate all of your input.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?