When it comes to making a treatment decision for IgA Nephropathy, focusing on your priorities is important. Asking yourself “What do I most want to achieve from treatment?”, “How will this treatment help me feel better and affect my kidney function?”, and “What are the upsides and downsides of the treatment?” are all great places to start.
Making treatment decisions
Making decisions about the best treatment path can be a process. The initial step – after coming to terms with your diagnosis – is to gather as much information as you can about your treatment options. Doing so may also help you feel more in control and empowered that there are things you can do to feel better. Be sure to ask your provider how different treatments might affect your day-to-day life.
Make a list of the treatments
Write down the treatments your care team is recommending—ask how to spell any words you don’t know (like drug names) and be sure you understand how each treatment will work, as well as the differences between them.
Ask about each option
- The risks of treatment – possible short- and long-term side effects
- The benefits of treatment – how will the therapy help you feel better and/or slow declines in your kidney health or function
- The evidence – has the treatment been well-studied? How safe and effective is it? Are certain types of people more likely to benefit or not? Even if it’s a new treatment for IgA Nephropathy, has it been used for other conditions?
- Costs – How much does the treatment cost? What will be covered by your insurance? There are prescription assistance programs that can help offset some of the cost.
- How the treatment is administered and if you need to travel for treatment
- How it might affect other medical conditions
- Your goals and personal feelings about the treatment. Write down what you most want to achieve with treatment.
Start a pro-con list
Write down and compare the benefits (pros) and downsides (cons) of each treatment. Sitting down and working on this list will also help take out some of the emotions around having IgA Nephropathy so you can focus on and decide which course you might like to take.
Talk it out
Talk it out. It might be helpful to talk through your treatments with someone you trust to help you sort through your thoughts and feelings too.
Play an active role in your care from the start. Don’t be afraid to ask questions until you feel fully informed about each one—you are the most important member of your care team.
Remember that even after you decide on a course of treatment, care options and needs change over time—don’t be afraid to voice your changing needs to your providers. Don’t forget available treatments are likely to change over time with new treatments becoming studied in clinical trials.
Use this worksheet to keep track of treatments you’ve been on and how they worked.
Seem like a lot? That’s because it is. We understand and we’re here to help. To learn more, see our Considering Clinical Trial page and Tips for Doing Your Own Research into options for treatment.