Everyone living with CIDP has a unique journey, and treatment needs may change over time to align with your experience, lifestyle, and goals. If you’re wondering whether your treatment plan is still right for you, it may help to know there are various options you can discuss with a healthcare professional. To help you prepare for that conversation, we gathered tips from the CIDP community about their experiences when reconsidering treatment.
01. Reflect on your current treatment experience
It’s natural to get comfortable with your treatment routine, but being honest about whether it’s truly meeting your needs can help you determine if you should explore your options.
I needed my husband more than before. I couldn’t shower or shampoo my hair like I used to—he had to help me.
Personal shifts, like changes in independence or CIDP symptoms, may prompt you to reevaluate your treatment plan with your doctor.
02. Establish your short- and long-term goals
Realizing she had to rely more on her husband inspired Crystal to reevaluate her short- and long-term goals, particularly around managing her symptoms and maintaining her lifestyle. She highlighted the importance of setting realistic goals and sharing them with your CIDP care team. “I know, for example, I’m not going to run again, but I did want to be a little more independent, so I shared that with my doctor.”
Your goals may change over time, so check in regularly with your doctor to explore the evolving treatment options and what may meet your needs.
03. Navigating the fear of changing CIDP treatments
When considering potential treatment options, you may wonder what could change—including side effects, effectiveness, or how it will fit into your routine. Crystal, for example, was initially reluctant to change treatment because she found comfort in sticking with a familiar option, despite the fact that it wasn’t meeting all her needs. She worked with her doctor to address her uncertainties, and eventually, her desire for a more independent life with CIDP outweighed her hesitation. “I wanted to live as well as I could, so I decided to be courageous and try a different treatment,” she recalled.
I wanted to live as well as I could, so I decided to be courageous and try a different treatment.
04. Research treatment options
Once you’ve reflected on your current treatment, your goals, and your uncertainties, doing your own research can help you understand how various treatment options may align with your needs. It can also help boost your confidence heading into your next healthcare appointment.
When researching, be sure to use reliable sources—like the GBS | CIDP Foundation International that offers articles, webinars, and videos, and a Centers of Excellence webpage to find doctors specializing in CIDP. You can also explore this CIDP treatment overview, which breaks down options in an easy-to-understand way.
Education and advocacy—those are your tools when you walk into the doctor’s office.
05. Have a productive treatment conversation with your doctor
After you’ve done the prep work, you’re ready to approach the conversation with your healthcare professional with clarity and confidence. Bring your notes to help guide the discussion and ensure your key points and questions are addressed. It can also help to jot down notes during the appointment—or bring a loved one to listen, support, and capture important details.
Jack emphasized the value of speaking up during your doctor’s visit to reach shared goals. “Education and advocacy—those are your tools when you walk into the doctor’s office,” he said. “I’m pretty persistent with my doctor about: What can we do? How are we going to do it? What can we change?”
06. Learn how to navigate health insurance
When you decide on a treatment path with your doctor, navigating health insurance can be overwhelming, but a few simple steps may make it easier to manage. Crystal shared some tips that have helped her stay on top of it all:
- Stay organized: Keep all your insurance paperwork in one place and highlight key details
- Partner with your healthcare provider: Collaborate with the doctor’s office to submit paperwork and required documentation
- Explore financial support: Research cost-saving options and financial assistance programs to help manage expenses
- Use patient support programs: Check if your treatment has a patient support program that can help with insurance, financial assistance, and more
- Talk to your insurance provider: Reach out directly to clarify coverage, CIDP treatment cost, and approval steps
For more guidance, explore the GBS | CIDP Foundation International financial assistance & insurance resources portal and this helpful article on navigating insurance with CIDP.
Feel empowered on your treatment journey
Following this process and staying open to conversations with your healthcare team can help empower you and may even help you find a treatment that addresses your needs. As Crystal shared, “I tend to be a creature of habit, but I’m glad I took the leap and changed treatments.” Wherever you are on your CIDP journey, having the tools and confidence to make a change can be an important step.
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