Community Views: What Should You Learn at Diagnosis?
Last updated: May 2021
The process of diagnosing psoriatic arthritis (PsA) is often long and frustrating. Finally arriving at a diagnosis is a relief. Living with this disease over time, you may find yourself wondering: Why did I not know about that?
Advice for those newly diagnosed with PsA
Feeling isolated, dismissed, or made to feel like this is all happening “in your head,” would make anyone want to give up, but you are not alone in all of this.
We asked, “What do you wish your rheumatologist told you when you were first diagnosed with PsA?”Our Facebook community provided great insights.
Pain and progression
Lack of preparation for the pain and progression of PsA was a common theme. The joint inflammation of PsA causes a lot of pain. Extended periods of inflammation further limit joint mobility and cause progression.1 Many of you said you wished you knew it would be a lifelong challenge.
“How quickly this would get worse.”
“There would be days when I cried from the pains in my knees.”
“I would never improve – manage, yes, but never truly heal.”
Inflammation and pain are 2 different things
While inflammation of the joints is the hallmark of PsA, you also reported high pain levels not always associated with inflammation. Even with inflammation control, pain persists. A new study has suggested this is more common than previously thought. Separately treating pain and inflammation could help achieve better outcomes for those with PsA.2
“That meds would slow the damage to my joints but would probably not impact the pain levels, fatigue, and overall lack of mobility.”
“That pain management is not the job of methotrexate.”
“When I started meds, I thought, ‘Ok, I’ll be better in a few months.’ How wrong I was!”
“Constant pain, even when there’s no inflammation.”
Finding the best treatment to manage your symptoms can take time. There is a lot to learn and consider. Some people said that having their doctors share more information about different treatments upfront would help. Some said it would also help to get a warning that finding the right treatment takes experimentation.
“That it would be trial and error with treatment.”
“Not to use prednisone as a maintenance drug. Save it for tapering to help with a flare.”
“To really consider using a biologic to slow the disabling process.”
“Don’t stop treatment unless you have to for a medical reason.”
“I wish my doctors had promoted Eastern medicine and other non-drug treatments.”
Any illness is a long recovery
You observed that other illnesses take an increased toll on a body with PsA. Recovering from the flu to managing seasonal allergies are complex undertakings. New inflammation to the body sets off PsA symptoms.
“That when you get sick, even a stomach bug can take you down so far. It’s hard to recover from ANYTHING!”
“Even seasonal allergies feel harder when combined with PsA.”
It impacts your whole life
A PsA diagnosis has a profound impact. Life does not return to normal. Adjusting every aspect of life to accommodate this disease takes a toll. Symptoms and disease management influence every decision you make.
“How much it would disturb my sleep and the fatigue it would cause.”
“How much it would affect every aspect of life. My mental health, my marriage, my day-to-day living, there’s nothing left untouched.”
It's worthwhile to note that it may very well be you don't have psoriatic arthritis, but something that presents similarly. It's not uncommon for patients to disagree with their doctors about their diagnosis. Make sure your doctor can articulate to you why they don't think you have psoriatic arthritis and ask for clarification on anything that contradicts the information you've found.
We appreciate everyone who shared their reflections on this prompt. Newly diagnosed or a veteran of PsA, we hope these responses are affirming for our community members.
Has PsA changed how you think about sex and intimacy?
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