Put Your Doctor to Work
At some point in their treatment journey, many who feel they’ve run out of good options give up on medical care. But the consequences of not treating or under-treating psoriasis and psoriatic arthritis are far-reaching.
Not getting appropriate treatment for PsA can lead to irreversible joint damage, fatigue and pain that can make it hard to stay employed, as well as disability and the loss of independence. Skipping treatment for psoriasis − or settling for undertreatment, which is at least as common − has major impacts on quality of life, says dermatologist Jerry Bagel, M.D., director of the Psoriasis Treatment Center of Central New Jersey in East Windsor and and NPF medical board member.
If fears about side effects are getting in the way of your care, talk to your doctor. Ask your dermatologist to educate you about the data on risks and benefits in a way that you can understand, says Bagel. “Many times, patients will say they heard a commercial that mentions cancer, tuberculosis or serious infections and be afraid. But they need to learn about the true risks with the drug their doctor is suggesting. It may be much different than they think.”
Sometimes the barrier to effective care isn’t potential side effects, but a hesitation to question the doctor. Bagel encourages you to take the lead, telling your dermatologist or rheumatologist how the disease affects you and how − as precisely as possible − your current medication is letting you down.
“We’re good at seeing how much disease someone has, how much skin or how many joints are affected,” he says. “What we can’t see is how itchy it is or know how much loss of sleep is happening or how much your joints hurt. To understand, we need to hear things like, ‘I’m still itching’ or ‘I have joint pains that keep me on the couch all day.’ ”
Managing Expectations and Medications
In this era of ever-expanding effective options for psoriasis and PsA, some people get their disease under control with their very first medication. Yet many still have to try a number of drugs before finding the one that works well for them, says Mandelin.
“There is no test that will tell us which drug is the right one for any given person,” he says. “Basically, prescription is being done by educated trial and error. We start with the things that are statistically more likely to be helpful to a large portion of the population and move down the list. Insurance can also drive drug choice.”
The trial-and-error period can last months, says Mandelin, who hopes a better understanding of the problem will keep individuals from becoming discouraged and quitting care. “For most, we can find a good option,” he says.
He encourages patients to ask their doctor for specific information about how well they can expect individual drugs to work.
“Ask what percentage of patients get clear or nearly clear on the drug that’s being suggested,” he says. “It’s also important to ask why this specific drug is being suggested for you. Certain biologics are safer for people with specific medical conditions such as multiple sclerosis or ulcerative colitis, and some work better for people who are overweight, for example.”
Bagel recommends giving your biologic enough time to work before moving on. “It can take from 12 to 24 weeks to get to maximum efficacy with a biologic,” he says. “Unless there is no improvement at all in 12 weeks, give it that time − as long as you’re tolerating it well.”
It’s also common to need more than one medication. “Combination therapy works well for many with psoriasis. Even with biologics, it might sometimes make sense to add a second therapy,” he says. His research has found that about 70 percent of patients who can’t reach the goal of 1 percent or less affected body surface area with a biologic hit that target when a topical is added.
The bottom line, says Bagel, is that with the right treatment, most individuals should expect their psoriasis or PsA to have minimal impact on their quality of life. The trick is to find that right treatment. Your health care provider is one of your greatest resources in your treatment journey. Don’t hesitate to turn to him or her.