Community Views: New Treatment Advice
Many feelings arise when preparing to start a new psoriatic arthritis (PsA) treatment. No matter how long you have been treating your PsA, new treatments trigger an emotional response. You may feel hopeful, scared, overwhelmed, or find yourself sighing, “Here we go again.”
Sharing concerns about new treatment
The more times you have gone through the process, the more discouraging it can feel. To learn more about the experiences of community members, we turned to followers of our Facebook page. We asked you to tell us, “When starting a new psoriatic arthritis treatment, what are you most concerned about?”
Here is what you shared.
With nearly 50 responses from community members, the No. 1 source of anxiety when starting a new drug is the potential for side effects. Community members shared how scary it feels not knowing how a drug may affect the body before beginning.
Those living with other medical concerns worry over how the new drug may interact with the illness and its treatments. Plus, if you have experienced drug side effects that feel worse than PsA symptoms, it may feel daunting to try something new.
“Even from a spouse perspective, the side effects make me cringe wondering how my husband will be impacted and the ripple effect for his ability to engage with our kiddos until things level out.”
“If it will exacerbate my asthma, anxiety, or psoriasis.”
“The side effects – some are worse than having PsA!"
The waiting game
Treatments for PsA take time before you may – or may not – feel the full benefits. Waiting for 12 or more weeks to see if a new drug will help or not is a long commitment. Especially challenging are when side effects present early. Will the potential benefit in several more weeks be worth the side effects you are experiencing now?
“The length of time you need to wait to see if there is an improvement (normally 12 weeks minimum), then you are back to square one if you need to start a new treatment.”
Insurance headaches and cost
A doctor’s recommendation for a new drug is only the beginning of the larger struggle: affordable access to the drug. Gaining insurance approval can be challenging, to say the least. If the drug is approved, the out-of-pocket cost can still be steep. Insurance can require you to switch to a different drug with little to no warning. Plus, assistance programs through the drug companies are often unavailable to those on government insurance, like Medicare or Medicaid.
“I have to fight with insurance and Medicare before I can agree to start the treatment.”
“Will my insurance cover it and keep covering it?”
“The copay for my Orencia infusions is $12,00/month. I don’t qualify for the traditional assistance programs because I’m on Medicare.”
“Pain returning! It seems like a bad dream thinking back to the constant pain, unexplained flares, horrendous skin pain, and frightening-looking pustular psoriasis. Five years in I am doing very well, and now that I’m being forced (by insurance) to make a switch, I am so fearful of its efficacy!”
The many feelings you have about starting a new treatment for PsA are real and valid. It is an exhausting process to go through so many times in search of effective treatment. Thank you to everyone who shared your experiences. We hope these comments help each of you feel affirmed.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?