Community Views: Talking About Psoriatic Arthritis Progression
When you are first diagnosed with psoriatic arthritis (PsA), your rheumatologist will want to determine the stage of the disease—mild, moderate, or severe.
Determining the seriousness of PsA, helps your healthcare provider figure out the best treatment course and how to best monitor progress.
Do you talk about progression at your doctor appointments?
Facing the reality of PsA progression
Opening up and talking about the future of your condition can be scary. For many people living with PsA, the difference-maker is their doctor.
Some people in the healthcare field make sharing easy, while others do little to make this a comfortable topic to discuss.
To find out more, we reached out to community members on our Facebook page. We asked you to share your feedback on this question: “The thought of progression can feel pretty daunting. How do you cope and talk with your doctor about progressing PsA?”
Here is what some of our community members had to say.
Sadly, I share nothing
For many in the community, talking to their doctor about their PsA diagnosis has not been very helpful. Several people mentioned getting only blank stares in return or hearing the same advice about medicine over and over again.
Sadly, it seems common for many of you to stop sharing your symptoms with your doctor once you find out that their recommendations do not shift based on your conversations.
- "I do not say much, because then I get the 'pain meds' lecture."
- "I do not. It is bad enough talking to them about what is going on day-to-day."
- "I try not to think about it, period. I know it will eventually kill me but I'm not going to take my life away until that time!"
- "That is future-me's problem. I just take my meds and try to do the best I can."
- "Try to talk. Met with a blank stare. Told to continue with Cosentyx. Seems pointless."
Tell the doctor only what is necessary
Similarly, others have found that it is helpful to share only the bare minimum with their doctors. They communicate some of the picture and maintain the doctor-patient relationship.
However, they have low hopes of getting any truly helpful feedback.
- "I just show him and tell him how painful it is."
Have a very open discussion
Those in the community who see a specialist say that they are having an entirely different experience. For some, meeting with their rheumatologist is incredibly helpful.
A few folks even keep journals of their symptoms, and their specialists take the time to discuss all this information.
- "My rheumatologist and I talk rather frankly about my disease progression."
- "Completely 100% openly."
- "I take a journal and highlight concerns. My rheumatologist takes the time to listen to it all. Saw him today, and he spent an hour with me! I am struggling and still working to find a biologic that works for me. I keep fighting, and so does my doc."
Talk to a caseworker
Others have found that a caseworker is their best advocate. This is a good reminder that you may have more options than you realize when it comes to discussing your health.
Your doctor may only listen so much, but a caseworker or other healthcare professional may be helpful in taking the time to listen to your concerns and consider the bigger picture.
- "I talk to my case manager (a physician’s assistant and nutritionist) at length at every appointment."
Have you experienced PsA disease progression?
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?