Can I Stop Taking Medication If My Atopic Dermatitis Symptoms Are Not Bothering Me?

A close up image of a variety of packaged pills and pill bottles against a solid pink background
Articles

By Jodi L. Johnson, PhD

Published On: Mar 12, 2024

Last Updated On: Mar 12, 2024

Atopic dermatitis (AD), a type of eczema, is a chronic relapsing skin disease that can persist throughout life. Many AD patients must take medications for very long periods of time to keep disease symptoms under control. After being on long-term medications, patients with AD might experience clearing of their symptoms and an improved quality of life. Naturally, this leads many patients to ask, “Can I stop taking my eczema medications? I’m feeling better.” 

This is a complicated question with a lot of factors to consider. The answer may depend on a number of considerations including the type of medication or medications you’re taking, dosage, disease stressors, flare frequency and intensity, plus other health factors. There is very little research to date around going off AD medications once symptoms are well controlled or stopping treatment altogether. In this article, we will explore the research around drug tapering, or taking a drug holiday, from certain types of AD medications and dive into what we do know.

How healthcare providers assess drug treatments

Drug treatments for AD range from topical (applied on the skin surface only) to systemic (swallowed or injected into the body).1 Drug options for treating AD have expanded tremendously in the last several years. As new medications were approved by the Food and Drug Administration (FDA), new clinical guidelines based on results of clinical trials and other evidence were also developed. These guidelines or recommendations give healthcare providers a framework for disease care and help them consider how to use new therapies most effectively within their larger treatment toolbox. These guidelines help clinicians decide which AD therapies are right for each patient.2-6 

Part of the concept of these clinical guidelines is that AD treatment exists on a ladder, meaning the strength or type of treatments can move up and down depending on severity and burden of disease, and what other medications are being taken or possible side effects.2 For example, this could mean moving a patient’s treatment up the ladder from topical medications to include systemic medications. These guidelines also help clinicians choose between different types of drugs like JAK inhibitors (JAKi), biologics or other treatment approaches. They also provide guidance on how long to stay with one treatment to see benefits.2-6

This flexible approach to treatment helps clinicians make recommendations and encourage their patients to work with them to make decisions for their care. Along these lines, when AD patients of Dr. Peter Lio, dermatologist and clinical assistant professor of dermatology and pediatrics at Northwestern University, ask him if they will have to take systemic medications forever, he tells them, “Nothing is forever.”

“Our goal is to get good, durable improvement for a number of months, and then we can try to decrease the dose or wean from the medication,” said Dr. Lio, who is also the co-founder and co-director of the Chicago Integrative Eczema Center. “Sometimes we can switch medications, which we call rotational therapy. This gives your body a break from one type of treatment and opens the door to even better improvement or possible remission with another agent. In the past there were not a lot of treatment options, but now we have a much broader palette of therapies to choose from!”

Knowing what patients consider the most important end goals for AD treatment also helps physicians discuss the best treatments to achieve patient goals and then work with patients to weigh the treatment benefits with its risks. “I try to go through a shared decision-making process with my patients and their families before starting any medication and at each follow up,” said Dr. Lio. “We talk about risks, benefits and long-term goals, and how they fit into their goals and concerns.”

Some studies have also revealed what AD patients consider to be the most important disease symptoms they want treatment to improve. For example, a study of 1,619 AD patients in 2020 revealed that over 90% of these patients considered the following treatment outcomes to be very important: freedom from itching, no longer experiencing a skin burning sensation, rapid improvement of skin symptoms, regaining control of disease and being pain free.7 A report of patient perspectives when working toward symptom relief disclosed patients’ top concerning symptoms included itch, condition and appearance of skin, sleep disturbance, anxiety and depression and reducing associated health issues like infections.8

Which medications AD patients use also depends on their personal risk factors and the other types of treatments in their treatment regimen. “The choice between adding a systemic medication vs. using topical medications depends on your risk factors, preferences, severity of disease and availability for regular laboratory tests,” said Dr. Vivian Shi, dermatologist and associate professor of dermatology at the University of Arkansas for Medical Sciences. “You should also relay to your healthcare provider your history of eczema, other illnesses that you are treating with other medications and whether you are planning on becoming pregnant or breastfeeding.”

Research and guidelines on tapering or stopping medications

In addition to all these factors, there have been several recent studies to try to develop guidelines and best practices for tapering or stopping AD medications. Here is what is currently known about these approaches for topical therapies and systemic treatments, such as oral JAKi and dupilumab.

Topical treatments

Topical treatments must be carefully used according to treatment recommendations to achieve clearing of symptoms, but it’s generally easier to increase, decrease or change the strength of the topical being prescribed to control AD compared to systemic medications.9 For mild and severe AD, clinicians may suggest a proactive management technique using topical steroids. This involves initial application of corticosteroids twice a day for a few weeks, then reduction to once a day for a few weeks, then continued use of a mid-potency topical treatment two to three times a week indefinitely to maintain clear or almost clear skin. Topical therapies can be increased or changed during flares and used aggressively for a few weeks before then returning to a less potent topical treatment for maintenance.9  

If AD is undertreated and not well controlled, then it is not advisable to reduce or stop topical treatment. “We must be careful since medications like steroids, if decreased too abruptly, can cause a rebound in symptoms, sometimes making things even worse than when they were started,” said Dr. Lio. “A cautious and gentle approach to changing, reducing or stopping [topical] medications is needed.”

Dupilumab

Several studies have examined tapering or withdrawing from dupilumab once symptoms are well controlled.11–14 

One study in 2020 looked at reducing the frequency of dupilumab dosing after long-term disease control with dupilumab, randomizing patients to injections every 4 or 8 weeks or no injections at all compared to continual dosing every 2 weeks, which is the recommended therapeutic regimen.10,11 A total of 72% of patients who maintained weekly or every 2 week doses stayed with well controlled symptoms. However, only 58% of patients who reduced the frequency to every 4 weeks, 55% of patients who reduced the frequency to 8 weeks or 30% of patients who withdrew from dupilumab remained well controlled.10 Under the conditions in these studies, it was not recommended to reduce or withdraw from dupilumab to maintain optimal clinical response.10,11

Instead of trying to stop taking dupilumab, several studies have focused on tapering the dose once the disease is well controlled for a significant period of time. The approved treatment regimen for adults is 600mg dupilumab at first followed by 300mg every 2 weeks. The dosage and frequency for pediatric patients varies based on age and weight. 

In a 2023 study, researchers had 29 adult patients who had well-controlled AD symptoms for 8 months go from 300mg dupilumab every 2 weeks to 300mg every 3 to 4 weeks. AD symptoms stayed well controlled in 83% of patients on this treatment schedule indicating that patients may not need to be treated as often for dupilumab to stay effective.12 

Two additional studies have looked at reducing the interval between dosing of dupilumab to every 3 or 4 weeks and to every 6 to 8 weeks after having achieved well-controlled AD for 6 months.13,14 In both cases the disease severity scores did not worsen in over 80% of patients who were treated less often, although some increased itch was reported when dose frequency was reduced to every 3 to 4 weeks.13,14 Since the majority of AD patients indicate that reduction in itch is of highest priority, even a small increase in itch may cause them to stay on the more frequent dose of dupilumab.1

Oral JAK inhibitors

There are very few studies to date about reducing or stopping treatment with oral JAK inhibitors (JAKi). These medications have not been approved for eczema treatment for very long or are still in clinical trials. Dr. Shi emphasized that it is important to match disease history with proper treatment in order to have the best chance of deciding if you need to stay on medications year-round or can go on and off medications seasonally. “If your disease activity is constantly high all year, you would benefit most from being on JAKi therapy all the time,” explained Dr. Shi. 

“If your disease activity is seasonal or cyclic, you may be able to control your symptoms with JAKi therapy only during higher states of disease activity,” Dr. Shi said. “JAKis are available in two doses, and usually doctors use the lowest dose that controls your symptoms. This gives the option to increase or decrease the drug dose as needed for control. You should never just go on and off medicines without instructions from your doctor.”

One study was recently published on reducing doses of baricitinib, a JAKi that has demonstrated long-term efficacy at treating AD over a full year in clinical trials but has not yet been FDA approved for AD treatment. Patients who had completed the long-term clinical trial on 4mg baricitinib for 52 weeks and were well controlled were re-randomized to stay on the 4mg dose or to taper to 2mg or 0mg (placebo) of the drug.15 While 87% of patients who continued to be on the 4mg dose that they had been on for the 52 weeks remained clear, almost clear or with mild skin symptoms, 61% of patients taking 2mg baricitinib and only 50% of patients who were removed from the drug remained clear, almost clear or with mild skin symptoms.15 For those who had originally been on 2mg baricitinib, 92% that stayed on 2mg experienced clear, almost clear or mild symptoms, while 71% who took 1mg and 45% who were removed from the drug remained clear, almost clear or with mild symptoms. Thus, it is possible to taper the drug to a lower dose in about two-thirds of cases, while only half or fewer patients who discontinued the drug remained with controlled disease. 

In this study, it was also determined that 80–88% of patients who returned to the 4mg dose after tapering or going off the drug were able to effectively recontrol symptoms.15 Staying on the 2mg dose was better than the 1mg dose going back to 2mg, (90% to 56%, respectively), while 86% of those who had been off the drug and reintroduced 2mg returned to clear, almost clear or mild symptoms. 

Studies on tapering or discontinuing other JAKis that have been FDA approved, abrocitinib16 and upadacitinib,17 have also been completed. For abrocitinib, 80% of patients removed from the drug experienced worsening of symptoms, but 82% of those patients returned to controlled disease after being reintroduced to 200mg abrocitinib.16 For upadacitinib, patients who were removed from the drug rapidly showed worsening of symptoms but improved rapidly when given 30mg upadacitinib. This was a very small study with each group only having between 10 and 20 patients. 

Overall, tapering JAKis may be feasible, but most studies are still not recommending going off the drug. However, knowing that you can start again on the drug and the disease will respond again is reassuring.

Finally, Dr. Shi offered the following advice about staying on or going off treatment with JAKis: “For many people, AD can be a lifelong condition that may require long-term therapy. The discussion of discontinuation of a JAKi due to improvement of condition comes down to informed decision-making between you and your provider. You could try a drug holiday in close observation by your healthcare provider to determine how your disease responds. Your provider should be able to tell you the risks and benefits of tapering a drug or a drug holiday. As a dermatologist, I will make my ultimate recommendation after considering my patients’ unique AD history and goals.”

Talk to your doctor before stopping any medications

There is still more research that needs to be done on stopping certain AD medications, taking a temporary drug holiday or reducing drug dosage. Some of the medications and treatments are so new there is no substantial real-world data yet. Healthcare providers do have some best practices and emerging data to help inform their recommendations and discussions with patients.

Here is Dr. Lio’s approach when patients with AD ask to reduce or stop a medication: “We have a goal of being clear from disease or nearly so, and symptom-free for at least a few months before we try to reduce or discontinue medications. Otherwise, we are simply undertreating which can be a lose-lose for everyone. Once disease control is achieved, we may be able to carefully taper and see how the skin responds. Skin is a dynamic organ and eczema is a very dynamic disease, so the only way to really know is to try.” 

In the end, the most important thing to remember is that you should never stop your AD medications without consulting with your healthcare providers about the best way to do so. One of the reasons you may be doing so much better with your AD symptoms is because of the medicine you’re taking. A good strategy is to continually talk with your doctor about your treatment goals and share any issues or concerns you’re facing.

Key takeaways:

  • AD is chronic and may need to be treated with medication for life.
  • There has not yet been much research on maintaining or regaining disease control after stopping or minimizing treatments for AD. There is always a risk of symptoms relapsing with reduced treatment or no treatment.
  • There are different types of treatment options for AD ranging from topical to systemic. Each treatment has different considerations for staying on the drug long-term or reducing its frequency of use.
  • Patients should always talk to their provider prior to reducing or stopping AD medication(s).

References

1. Kwatra SG, Lio P, Weidinger S, et al. Patient preferences for atopic dermatitis treatments: a discrete choice experiment. J Dermatolog Treat. 2023;34(1):2222201.

2. Boguniewicz M, Fonacier L, Guttman-Yassky E, Ong PY, Silverberg J, Farrar JR. Atopic dermatitis yardstick: Practical recommendations for an evolving therapeutic landscape. Ann Allergy Asthma Immunol. 2018;120(1):10-22 e12.

3. Boguniewicz M, Fonacier L, Guttman-Yassky E, Ong PY, Silverberg JI. Atopic Dermatitis Yardstick update. Ann Allergy Asthma Immunol. 2023;130(6):811-820.

4. Davis DMR, Drucker AM, Alikhan A, et al. Guidelines of care for the management of atopic dermatitis in adults with phototherapy and systemic therapies. J Am Acad Dermatol. 2023.

5. Sidbury R, Alikhan A, Bercovitch L, et al. Guidelines of care for the management of atopic dermatitis in adults with topical therapies. J Am Acad Dermatol. 2023;89(1):e1-e20.

6. Zuberbier T, Abdul Latiff A, Aggelidis X, et al. A concept for integrated care pathways for atopic dermatitis-A GA(2) LEN ADCARE initiative. Clin Transl Allergy. 2023;13(9):e12299.

7. Augustin M, Langenbruch A, Blome C, et al. Characterizing treatment-related patient needs in atopic eczema: insights for personalized goal orientation. J Eur Acad Dermatol Venereol. 2020;34(1):142-152.

8. McCleary KK. More Than Skin Deep: Understanding the Lived Experience of Eczema. Paper presented at: Eczema Patient-Focused Drug Development Meeting; March, 2020, 2019.

9. Butala S, Paller AS. Optimizing topical management of atopic dermatitis. Ann Allergy Asthma Immunol. 2022;128(5):488-504.

10. Worm M, Simpson EL, Thaci D, et al. Efficacy and Safety of Multiple Dupilumab Dose Regimens After Initial Successful Treatment in Patients With Atopic Dermatitis: A Randomized Clinical Trial. JAMA Dermatol. 2020;156(2):131-143.

11. Lio PA. Considerations in Weaning or Withdrawing Dupilumab Therapy-Nothing Is Forever. JAMA Dermatol. 2020;156(2):119-120.

12. Mastorino L, Gelato F, Richiardi I, et al. Dose reduction of dupilumab in atopic patients with controlled atopic dermatitis: A safe and effective practice? J Eur Acad Dermatol Venereol. 2023;37(5):e691-e692.

13. Spekhorst LS, Bakker D, Drylewicz J, et al. Patient-centered dupilumab dosing regimen leads to successful dose reduction in persistently controlled atopic dermatitis. Allergy. 2022;77(11):3398-3407.

14. Spekhorst LS, Boesjes CM, Loman L, et al. Successful tapering of dupilumab in patients with atopic dermatitis with low disease activity: a large pragmatic daily practice study from the BioDay registry. Br J Dermatol. 2023;189(3):327-335.

15. Reich K, Simpson E, Wollenberg A, et al. Efficacy of downtitration or treatment withdrawal compared with continuous dosing after successful treatment with baricitinib in patients with moderate-to-severe atopic dermatitis in a randomized substudy from the long-term extension study BREEZE-AD3. Br J Dermatol. 2023;188(2):208-217.

16. Blauvelt A, Silverberg JI, Lynde CW, et al. Abrocitinib induction, randomized withdrawal, and retreatment in patients with moderate-to-severe atopic dermatitis: Results from the JAK1 Atopic Dermatitis Efficacy and Safety (JADE) REGIMEN phase 3 trial. J Am Acad Dermatol. 2022;86(1):104-112.

17. Guttman-Yassky E, Silverberg JI, Thaci D, et al. Upadacitinib treatment withdrawal and retreatment in patients with moderate-to-severe atopic dermatitis: Results from a phase 2b, randomized, controlled trial. J Eur Acad Dermatol Venereol. 2023;37(12):2558-2568.

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