OpenHealth Q&A

Hydroxychloroquine Prescription Following Low C4 Levels: Should I Continue?

Demographic Information: 19 years old, Assigned Female at Birth. Medical History: Diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), reactive gastropathy of unknown origin, obsessive-compulsive disorder (OCD), autism spectrum disorder (ASD), and major depressive disorder (MDD). Some of my healthcare professionals suspect mast cell activation syndrome (MCAS), though I have not been formally diagnosed. Current Medications: I am currently taking 250 mg of clomipramine, 15 mg of memantine, 1 mg of clonazepam, 30 mg of loratadine, 40 mg of famotidine, 30 mg of propranolol, 15 mg of midodrine, 6 mg of naltrexone, and 200 mg of hydroxychloroquine. Additionally, I use iron and vitamin C supplements to address low ferritin levels and take 3 mg of melatonin as needed for sleep. Several months back, I consulted a rheumatologist upon recommendation due to unexplained rashes, joint swelling, and discomfort that couldn't be attributed to my current conditions (I initially believed they were linked to ME/CFS, but my ME specialist had doubts). Despite blood work showing no indicators of autoimmune disorders—such as normal levels for ESR, CRP, ANA, and RF—I was still referred to rheumatology. The rheumatologist conducted further extensive blood testing and subsequently prescribed hydroxychloroquine. He suggested I may have undifferentiated connective tissue disease (UCTD) but did not formally diagnose me. While I value his expertise, I want to ensure that I am only taking necessary medications. My apprehension stems from the fact that, among 18 blood tests performed, complement C4 was the only abnormality, which was recorded as slightly low. The battery of tests included assessments such as creatine kinase, a myomarker panel, HLA association panel (including celiac screening), comprehensive metabolic panel (CMP), complete blood count (CBC), ESR, CRP, anti-CCP, ANA, anti-dsDNA antibodies, anti-RNP antibodies, anti-Scl70 antibodies, anti-centromere antibodies, anti-Sm antibodies, anti-Ro antibodies, anti-La antibodies, and complement C3, alongside C4. I have been on hydroxychloroquine for three months and have noticed some improvements: although my fatigue persists, the rashes on my hands and wrists appear less severe, my fingers look slimmer, and joint pain has diminished. This does lend some reassurance about continuing the medication; however, I am concerned that these benefits could be attributed to either a placebo effect or the low-dose naltrexone rather than the hydroxychloroquine itself. My primary worry is the potential adverse effects of using hydroxychloroquine if it is not warranted for my condition. Are there specific signs I should monitor or indications suggesting that this medication might not be necessary? Should I alleviate my concerns, or is there reason to be cautious? Any insights would be immensely helpful, thank you!

Answers (1)

2/7/2026, 4:20:31 AM

OpenHealth AI

It’s understandable to be cautious about continuing medication, especially when there are multiple factors at play in your health. Let’s break down the situation with hydroxychloroquine and your concerns about its necessity and safety.

Summary of Key Points

• You’ve been on hydroxychloroquine for three months, noticing some improvements in rashes and joint pain despite persistent fatigue.
• Your recent blood tests showed low C4 levels but no definitive indicators of autoimmune disease.
• Concerns about potential side effects and whether the medication is warranted are valid given the complexity of your health conditions.

Explanation

Hydroxychloroquine is often used for conditions like rheumatoid arthritis and certain connective tissue diseases due to its anti-inflammatory properties. In your case, while your blood tests did not confirm a specific autoimmune disorder, the potential diagnosis of undifferentiated connective tissue disease (UCTD) and the improvements you've noticed could suggest a rationale for continuing this medication.

• C4 Levels: Low complement C4 can indicate some immunological issues, but it is just one piece of a larger puzzle.
• Improvements: Noticing benefits, such as reduced skin rashes and joint discomfort, may indicate hydroxychloroquine is providing a therapeutic effect.

Next Steps

1. Monitor for Side Effects: Keep an eye out for any side effects of hydroxychloroquine. Common ones include nausea, headache, dizziness, and skin reactions. More serious but rare risks include vision changes and heart issues. If you experience any unusual symptoms, it’s important to report them to your healthcare provider.

2. Evaluate Symptoms: Continue to track your symptoms over the next month. Note changes in fatigue, joint pain, or skin rashes. A symptom diary can help clarify whether the medication or other factors are influencing your condition.

3. Assess with Your Provider: Schedule a follow-up appointment with your healthcare provider, possibly the rheumatologist, to discuss your observations and concerns. It could be beneficial to reevaluate the continued need for hydroxychloroquine based on your symptom diary and any new developments.

4. Consider Communication: If possible, reach out to your healthcare team with any pressing questions or for reassurance regarding your treatment plan. It’s crucial to feel comfortable with the direction of your care.

5. Personal Reflection: Reflect on how you feel about the medication—both its necessity and the benefits you’ve experienced. Your input is valuable in shaping your treatment approach.

Reassurance

It's perfectly normal to question medical treatments, especially with complex medical histories. Keeping an open line of communication with your healthcare team is essential in ensuring you receive appropriate care tailored to your unique set of circumstances. You’re doing a great job in advocating for your health by seeking clarity and understanding.