OpenHealth Q&A

Questioning the Standard Practice of Rounding Down IVIG Dosages Without Consent

Subject: California Resident, 41 Years Old Diagnosis: Primary immune deficiency hypogammaglobulinemia Treatment: Monthly IVIG infusions via port (dosage specified below) I am writing to inquire whether my recent experiences align with standard medical protocols or if I should consider escalating the issue. Since January, I have faced significant difficulties with my IVIG infusion therapy and noticed worsening symptoms affecting my daily activities. In response to these issues, my physician decided to adjust my dosage from 38g to 42g at the beginning of January. To my surprise, I learned only yesterday that the pharmacist at the infusion center has consistently reduced my prescribed doses to 40g over the past six months. This means that my original 38g dose was rounded up to 40g, and when my dosage was increased to 42g, it was once again lowered back to 40g. Thus, despite my regular appointments and constant discussions about my treatment progress, there has been no real increase in the medication I have been receiving. I was not even aware of these changes. The pharmacy claims this approach is cost-effective, as IVIG bottles only come in certain increments (5g, 10g, or 20g), which helps minimize waste but ultimately deprives me of the necessary dosage. I was informed that this practice is, in fact, standard procedure for IVIG prescriptions. My physician expressed surprise upon learning this information, noting he had not been informed by the pharmacist. However, I have experienced similar issues in the past with my doctor being unresponsive—failing to check lab results and returning my calls. Now, my dosage has been raised to 45g to account for the previous rounding, and we will resume intensive monitoring. If the adjustments still do not yield results, we may switch to a three-week schedule, a decision that could have been made much earlier had I been fully informed of my treatment. While an increase of 2g may seem trivial, over six months, especially when dealing with an immune deficiency, this is a significant variance. I have been diligent about my health—making lifestyle changes, adhering to infusion schedules, and undergoing numerous blood draws—only to discover that this adjustment was never executed. This revelation feels like a setback to my recovery efforts, particularly as I continue to document worsening symptoms. It’s disheartening knowing that after six months of infusions, my dosage has stagnated and I feel defeated. I am seeking insights from others who might have faced similar circumstances: - Is it within legal or ethical boundaries for infusion pharmacists to round down IVIG dosages without documented consent from the prescribing doctor? - Have others encountered silent dosage reductions due to vial sizes or inventory costs? - Could it be that the pharmacist did attempt to communicate with my physician, who simply overlooked it? - Should I file a formal complaint against the pharmacy, the infusion center, or any relevant parties? For half a year, I have felt unwell while trying to adhere to every medical guideline and recommendation to improve my health. Learning that a possible oversight could have hindered my progress is incredibly disheartening. I have shed tears, questioning why my diligent efforts have not resulted in healing. Realizing that my struggles could stem from a preventable mistake adds to the sense of despair. Given that this infusion center handles serious medical conditions, one cannot help but wonder about the potential risks for patients undergoing chemotherapy or other critical treatments. A similar lapse in such scenarios could have devastating consequences. This underscores the necessity to address and review such practices thoroughly. I appreciate this community for its support and guidance. I am not looking to create controversy or blame anyone, but after all that I have endured, I hope my healthcare team prioritizes my well-being to prevent similar issues from arising for others in the future.

Answers (1)

7/19/2025, 6:40:46 PM

OpenHealth AI

Your concerns about the rounding down of your IVIG dosages without consent are valid and reflect serious considerations regarding patient care and communication in your treatment. Let's address your main questions and provide guidance moving forward.

Key Points

1. Dosage Adjustments: Your experience of being prescribed higher dosages that are not administered as intended is alarming and could impact your health.
2. Legal and Ethical Concerns: It is crucial to understand the ethical implications of dosage changes and patient consent.
3. Next Steps for Action: Taking steps to communicate effectively with your healthcare providers and exploring formal complaint channels is important.

Explanation

• Dosage Impact: When managing conditions like immune deficiency, the exact dosages matter greatly. A reduction—even a small one—could hinder your recovery and symptom management.
• Ethics of Rounding Dosages: Generally, pharmacists should not alter a physician's prescription without prior consent unless it’s in line with established protocols communicated to the patient. You have a right to be informed about any changes to your treatment.
• Communication Gaps: Miscommunication between the pharmacy and your physician can happen, but it’s concerning when it affects your care. This should ideally be documented clearly for future reference.

Next Steps

1. Document Your Concerns: Write down your experiences, including dates, dosages prescribed, and any communications with your healthcare providers. This will help when discussing your case.

2. Communicate With Your Physician: Schedule a meeting with your physician to discuss your concerns directly. Bring documentation, and express how the changes (including rounding down) have affected your health and treatment journey.

3. Inquire About Protocols: Ask your physician if they can clarify the pharmacy’s policies regarding dosage adjustments and if they feel this practice is appropriate. Their viewpoint may provide insight and help address your concerns more effectively.

4. Consider Filing a Complaint: If you still feel that your care has been compromised, consider filing a formal complaint with the pharmacy or the infusion center. Outline your concerns clearly, along with the impact it has had on your health.

5. Seek Support Groups: Connect with others facing similar treatments or conditions. Hearing their experiences may validate your feelings and provide additional avenues for support.

6. Stay Vigilant: Continue to monitor your health symptoms closely and keep an open line of communication with your healthcare team. If any new worsening symptoms arise, address them immediately.

Final Thoughts

It’s understandable to feel overwhelmed and frustrated by this situation. You have shown commendable diligence in managing your health, and it’s crucial to advocate for yourself. Remember, you deserve clear communication and accurate treatment in your care journey. Please feel free to reach out if you need further guidance or support.