From tar baths and phototherapy to biologics to topicals and back again (except the baths), Judy Dubac has “been through the mill” in her quest to treat plaque psoriasis, which the 69-year-old has had since her late twenties.
Changes in her insurance and dermatologists dictated some of these shifts. “I was clear on one biologic as long as I took my injections twice a week,” she says. “But when my insurance decided it would only pay for one injection a week, guess what happened? Flare.”
Flares meant she often had to wind plastic wrap around her thigh to prevent a bad patch from splitting open. Dubac eventually tried another biologic that worked. But she had to stop the drug when her insurance changed yet again. A move from Las Vegas to Passaic, New Jersey, where she now lives, resulted in new insurance and more options for both drugs and dermatologists. By this time, however, Dubac was fed up with needles.
“I’ve hated shots since I was a child. I bled every time I injected myself and it was hard dealing with getting rid of the syringes,” she says.
Although being clear felt wonderful, Dubac wanted an easier-to-handle, less painful treatment. Before finding it, however, she’d bounce back to topicals and sought relief in beach vacations.
Why fix it if it ain’t broken?
Even when a treatment works well, it’s reasonable to consider a change if some aspect makes it hard for an individual to use, says rheumatologist Arthur Mandelin, M.D., Ph.D., and NPF medical board member. For instance, if a biologic is working well, but has uncomfortable side effects, you should tell your doctor.
“An intolerance to one medication doesn’t mean the person is at the end of his rope. Often, these intolerances are very drug-specific; sometimes even a drug in the same class will be tolerable when another was not,” says Mandelin, associate professor of medicine in the division of rheumatology at Northwestern University Feinberg School of Medicine in Chicago.
Even issues that seem small can set the stage for treatment failure. Giving up on topicals that work well but are messy or time-consuming to apply is a classic example.
“No matter how minor an annoyance may seem, if it annoys you every single time you have to take the drug or use the medicine, you’re probably not going to adhere,” he says. “Annoyances turn into non-adherence, which turns into treatment failure.”
Dubac finally found something that clears her skin and fits her preferences and lifestyle. It’s a newer medication in pill form that targets and blocks small molecules involved in kicking off and ratcheting up inflammation.
“I absolutely love this medication. No needles, no bleeding, and I don’t have any spots of psoriasis at all. I’m totally clear,” she says. Her message to others with psoriatic disease: Don’t give up until you find something that works – and that you can live with.
That goal is reasonable for most patients with psoriasis and for many with psoriatic arthritis (PsA), says Mandelin, who acknowledges that some with a stubborn or severe case of the disease may have to make more compromises.
“Sometimes we do get to the point where we have to make a choice between efficacy and annoying but not medically dangerous side effects. It’s not common but does need to be part of the discussion with people who have tried a lot of drugs,” he says. “But, until you get to the bottom of the barrel in terms of therapeutic options, I’m willing to switch medications for what may on the surface seem to be minor issues.”
If something about a particular drug makes you hate using it, Mandelin advises a frank, clear discussion with your dermatologist if that will help you stick with therapy, he says. “Be straightforward and use concrete examples. Tell your doctor the specific problems the medication causes for you and how that’s affecting your life.”
Step therapy, not psoriasis, causes complications
Three years ago, Midi Magee’s psoriasis covered about 80 percent of her body.
“I was so desperately unhappy; it really depressed me. I went to a dermatologist and he suggested immune system suppressing medications, but the [potential side effects] scared me. I thought it was better to live with the disease and find another way,” says Magee, who is 37 and lives in Shrewsbury, United Kingdom.
The U.K.’s National Health Service requires people with psoriasis to try older immunosuppressing medications, which often have serious potential side effects, before allowing the prescription of biologics with better safety records. This form of step therapy, in which patients must try and fail other medications before getting prescribed a biologic, is also common in the U.S. The National Psoriasis Foundation and other patient advocacy organizations are working to pass legislation that would ensure transparency in the step therapy process and exceptions when necessary.
Rather than risk the side effects, Magee tried herbal medicines and ordered “miracle” creams off the internet. “I also spent loads of money on acupuncture. I was literally trying anything I could find,” she says. “My mistake was that I didn’t think anyone could do anything more to help me − except to offer me drugs I didn’t want to take.”
Magee’s uncontrolled psoriasis eventually drove her back into the medical system, where she found a dermatologist who was up on the latest options. Now, she uses a topical foam that combines corticosteroids with a form of vitamin D. She’s near clear and managing well with weekly applications and occasional ultraviolet B light sessions.
Her advice echoes that of Dubac’s. “Don’t give up if you haven’t found a doctor with the right answers. Keep looking for dermatologists who understand what psoriasis is and all that is available to treat it,” she says.
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 pso-riasis 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.
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Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.