Testing for primary immunodeficiency (PI) can take many months – and after the diagnosis, there are decisions to make. Here are some questions to consider asking your doctor once you’ve been diagnosed.
Questions to Ask About Treatment
- What is the specific type of primary
immunodeficiency I have?
- What therapies are available to treat it?
- Which treatment do you recommend and why?
- Are there alternatives to this approach?
- How long will treatment be required?
- How will I know if the therapy option I choose is working?
- Will I be able to change my mind?
Questions on Intravenous (IVIG) and Subcutaneous (SubQ) Immunoglobulin (IgG) Therapy
- What is the goal of IgG therapy?
- Will I still have a choice of how and where my therapy is administered (home or infusion center, SubQ or IVIG)?
- What are IVIG and SubQ infusions like?
- What brand of IgG will you prescribe and why?
- How will you determine my dosage? Will it be adjusted?
- Do I have a choice of locations – hospital, infusion suite,
- What are possible side effects? How should they be managed?
- Will I need any pre- or post-medication?
- Is there anything I need to do to prepare myself (or my child)?
Questions to Ask About Living with PI
- Who will be my main point of contact – you or my primary care doctor?
- Can I do anything to help prevent infections?
- Are there restrictions I should follow?
- What vaccines do you recommend? Are there any I should be avoiding?
- Is there a specific medical diet or nutritional guidelines you would recommend?
- Is there a known genetic cause for this type of PI? If so, how will I know if other family members need to be tested?
- What risk factors related to PI should I be aware of?
- What’s the long-term prognosis?
- Do I need to see any other specialists?
- Who should I call if I get sick?
- Who can help me with insurance details?