2016 RRDi Member Survey on Rosacea
The RRDi’s second survey on rosacea ran from June to December 2016, and the results from our 193 respondents are summarized here. Survey questions were developed with input from physicians on the RRDi’s Medical Advisory Committee, and adapted to provide more structured responses from our 2015 survey.
Many thanks to all of you who took the time to participate and share your experiences. We hope that this wealth of information will be of use to patients, doctors and researchers.
Of our 193 respondents, a third (32%) are RRDi members, three quarters (75%) are female, and the vast majority (97%) have received a positive diagnosis of rosacea from a physician. Most respondents are over 40 (73%) and symptoms typically first appeared as adults.
Rosacea can present itself in the form of many different symptoms, primarily apparent on the facial skin. Symptoms typically vary in severity over time, and may be exacerbated by environmental exposures. Persistent redness is the primary complaint of half of all rosacea patients, followed by skin lesions (24%).
In addition to dermatological symptoms, rosacea can manifest as an ocular condition, with symptoms such as dry eyes and blepharitis. Ocular irritation may be exacerbated by dietary or environmental exposures. In addition to the symptoms summarized here, some respondents also reported blurry vision and meibomian gland dysfunction.
Rosacea is often found in people also experiencing some form of gastrointestinal upset. Here, 36% reported having been diagnosed with a serious GI disease, while others experience food insensitivities or minor GI disorders.
Of those reporting a GI disease, the vast majority have irritable bowel syndrome. Others mentioned diverticulosis, ulcerative colitis, gastro-esophageal reflux and adenocarcinoma. Minor GI complaints, experienced at least sometimes by 74% of respondents, include bloating, constipation, diarrhea, indigestion and flatulence. In addition, 33% of respondents had experienced food poisoning prior to rosacea onset (46% no, 19% don’t know).
Many rosacea patients report exacerbation of symptoms after consuming certain foods or drinks, or following exposure to environmental or physical conditions. Here we report the percentage of respondents reacting to specific dietary and environmental triggers.
There are many different prescription medications used to treat rosacea symptoms. Here we summarize use of the major classes of medications, classify how well rosacea symptoms responded, and whether side effects interfered with treatment.
The highest rate of complete remission or long term significant reduction of symptoms was reported following treatment with immunosuppressants (61%; 19 of 31 respondents), followed by acariacides (anti-mite medication; 54%; 20 of 37 respondents), then ivermectin (Soolantra) at 51% (28 of 55 respondents). Lowest long term benefit was found from topical antibiotics (17%; 29 of 173 respondents).
The rate of side effects severe enough to discontinue treatment was lowest at 15% for ivermectin (Soolantra; 6 of 41 respondents), and highest for brimonidine (Mirvaso; 45%; 22 of 49 respondents) and steroids (36%; 16 of 44 respondents).
Of those respondents who have used antibiotics, metronidazole was by far the most prescribed topical and doxycycline the most prescribed oral antibiotic. Common side effects of topical antibiotics were reported to be increased redness and dry skin, and burning or stinging sensations. Oral antibiotics produced a wide range of side effects, the most common reported to be stomach upset, yeast infections and photosensitivity. Retinoids also produced side effects for many respondents, primarily dry, itchy, flaky and sensitive skin. Transient clearing followed by ‘rebound’ redness was a common complaint of those using brimonidine.
This prescription medication summary is somewhat limited by problems with imperfect recall - it is common for rosacea patients to have tried several different treatment over the course of many years, and recalling which specific medications were used and details of their outcomes can be unreliable.
In addition to these prescription medications, 38% of respondents had tried topical sulfur products (59% no, 4% don’t know), of which 34% (25 of 74) respondents found long term benefit and 19% (14 of 74) discontinued use due to side effects.
37% of respondents with ocular symptoms have treated them with medication (60% no, 3% don’t know), over half of whom found long term improvement from treatment (51%). 81% use other methods to manage ocular symptoms, such as warm compresses and eyelid wipes.
There are several light-based therapies now available to treat rosacea symptoms, and 32% of respondents had tried one or more treatments, with intense pulsed light (IPL) being the most common. Overall, the rates of side effects interfering with treatment were lower than for medications, from zero for IPL to 3% for laser and 10% for light-emitting diode (LED) therapy. Long term improvement of symptoms was most frequent for LED therapy (73%), and lower with IPL (50%) and laser (47%). Of the 30 respondents who selected “other” PDT, 8 provided details, 7 of which were in fact laser therapies, including V-beam, so overall rates of usage and benefit for laser therapies should accordingly be slightly higher.
Most respondents report regular use of sunscreen and moisturizer. Many commented on feeling the need to use cosmetics to mask symptoms, and the long (and often expensive) trial and error process of finding suitable cleansers and skin care products.
Here are some typical comments about managing rosacea:
In addition to physical symptoms, rosacea has a significant psychological burden on patients. The majority of respondents reported sometimes avoiding people (74%), missing work or social events (52%), and feeling depressed (69%) due to rosacea symptoms. Antidepressants or beta-blockers have been prescribed to 20% of respondents to help manage rosacea symptoms, of whom 67% found them beneficial.
The effect of rosacea on quality of life drew many comments, mostly around a few central themes:
After exploring the various difficulties we face on a daily basis, we rounded out the survey with a question about positive benefits of living with rosacea. Here are a few representative comments:
Thank you very much to those of you who shared your experiences with us, with special appreciation to those who have found a silver lining in our rosacea cloud!