Navigating Unexpected Safety Issues Following Successful Treatment
In my early thirties, weighing 118 lbs and with no significant medical history, I am a non-smoker who takes vitamin D3 and glycine as dietary supplements. Originally from Sudan, I left there over two decades ago and I have deep skin. ### Background on Treatment In April 2024, I noticed an itchy, scaly patch appear on the left side of my face. It progressively spread across my face and to some areas of my neck. I have experienced hives due to environmental factors in the past, which I managed with antihistamines. My skincare routine is minimalistic and free from fragrances. Up until 2024, I hadn’t faced any major facial skin issues. None of the usual home remedies worked for me, and in a state of desperation, I tried several active treatments. Eventually, I consulted a dermatologist because my face became unbearably hot, itchy, tight, and painful, with pustules forming that disrupted my sleep; I rated the discomfort as a 4 out of 10, despite having a fairly high threshold for pain. - The initial dermatologist prescribed doxycycline, which cleared my skin within five days. However, I developed hives and an essential tremor, prompting me to discontinue the medication due to the adverse reaction. - A few months later, when my condition worsened, I visited an urgent care NP who prescribed a 10-day course of prednisone. While it provided temporary relief, my symptoms resurfaced upon completion. - In March 2025, while browsing Reddit, I discovered a post detailing a person's experience mirroring mine, with pustules and symptoms similar to mine. This led me to the r/roscea community, where I initially felt skeptical about being diagnosed due to my deeper skin tone. I regretted the futile attempts at self-treating and realized I needed more effective help. After reading multiple threads, I decided to try over-the-counter 0.5% topical ivermectin, which alleviated the burning and itching. Nonetheless, I continued to experience flare-ups every couple of weeks. Consequently, I requested a referral to a dermatologist through my primary care physician. - Finding a black dermatologist in my area proved challenging, so I opted for a dermatopathologist instead. I've never chosen my healthcare providers based on race; I just find it challenging to receive evidence-based care from non-black dermatologists. - I meticulously documented my symptoms, bringing photos and assessments to my appointment with the dermatologist, who concurred with my self-assessment and diagnosed me with demodicosis. - I received a treatment plan consisting of topical ivermectin, permethrin, ketoconazole, and two oral doses of ivermectin (200 μg/kg) spaced a week apart. Thankfully, I experienced no adverse effects, and the treatment was helpful, although I still encountered mild flare-ups every couple of weeks. ### Current Situation When I requested an extended treatment course based on a 2024 study indicating 75% remission with eight-week regimens and ongoing flare-ups, my dermatologist suddenly mentioned the need for a Loa loa screening given my birth in Sudan. According to the WHO, the prevalence of this parasite in the region is almost nonexistent. Since I haven't lived there in over 20 years and show no symptoms, it seemed surprising to me. The dermatologist recommended I consult with an infectious disease specialist before proceeding with further treatment. - Later, she declined to extend my prescription, citing that the risks of prolonged oral ivermectin therapy outweighed the potential benefits. She expressed discomfort with prescribing due to concerns over neurotoxicity and severe side effects, including possible death. ### My Inquiries - If Loa loa was genuinely a pertinent issue based on my geographical origins, why wasn’t I tested for it before taking oral ivermectin the first time? - Having taken oral ivermectin successfully twice without complications, isn't this indicative that I’m not co-infected with Loa loa? - What medical rationale exists for denying extended treatment when I have already proven the medication’s safety for me? - Am I being unreasonable in my requests, or should I pursue a second opinion? This situation feels illogical to me. It’s baffling how the very medication that was previously deemed safe for me is now considered "too hazardous" for continued use. I appreciate any insights you can share. I am earnestly striving to improve my self-advocacy skills in healthcare settings.
Answers (1)
6/21/2025, 4:01:40 AM
OpenHealth AI
Your situation raises several important considerations regarding your skin condition, treatment history, and the current recommendations. It's understandable to feel confused and frustrated given the changes in your treatment plan. Let’s address your inquiries and outline some steps you can take moving forward.
Key Points:
- Diagnosis and Treatment Plan: You have been diagnosed with demodicosis and have previously responded well to oral ivermectin, which is relevant for assessing your safety profile.
- Concerns About Loa loa Screening: The request for a Loa loa screening at this stage, after having previously taken ivermectin without issue, seems inconsistent with the initial treatment approach.
- Need for a Second Opinion: Given the complexity of your situation and the contrasting opinions between healthcare providers, seeking a second opinion may be a beneficial step.
Explanation:
- Loa loa and Ivermectin: Loa loa is a parasitic worm that can cause complications if ivermectin is administered to individuals infected with it. Your dermatologist's concern may stem from a preventive approach, but it does seem unusual given your lack of symptoms or history in an area with high prevalence.
- History with Ivermectin: Since you have taken ivermectin twice without experiencing side effects, it does suggest that you either do not have an active Loa loa infection or your risk is low. Typically, such screenings are prioritized in individuals with active infections or symptoms.
- Evolution of Medical Advice: Medical knowledge evolves, and physicians must balance personal patient history with new studies or guidelines. The abrupt change in treatment recommendations could also arise from evolving data on the safety of long-term ivermectin use.
Recommended Next Steps:
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Informative Consultation: Before pursuing additional treatment, ask your dermatologist why a Loa loa screening was required now and request clarification on what data supports the caution over ivermectin. Documentation of your experience with ivermectin can be seen as valuable evidence.
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Pursue a Second Opinion: If you remain uncomfortable with your dermatologist’s rationale, consider seeking a second opinion from another dermatologist or an infectious disease specialist. Be sure to select someone familiar with treating conditions common in individuals from Sudan or that have darker skin tones.
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Enhancing Self-Advocacy: Continue documenting your symptoms and treatment responses meticulously. This includes medication doses, side effects, and any significant changes to share with any new healthcare providers.
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Explore Alternative Treatments: While you await your next appointment, research other therapeutic options for demodicosis or similar skin conditions. Education can empower you to make informed decisions and discuss potential alternatives with healthcare professionals.
Your concerns are valid, and it is crucial to have clarity and confidence in your treatment approach. By taking these steps, you can advocate for your health effectively while ensuring that you receive the best possible care tailored to your needs. Let me know if you would like more information on specific alternative treatments or strategies for managing your condition.
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