When I was first diagnosed with the rare, incurable disease called CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy), my doctor came into the office after all the standard tests and said,
“Well, I think you have CIDP. You better go home and Google that.”
Then he abruptly walked out the door. Truth.
I was left sitting alone stunned, shaking and most of all terrified. When I finally made it out to my truck and used the Google to look up CIDP, I fell apart. FYI: don’t launch Google after any diagnosis!
This is how a doctor is NOT to handle a patient who has just been given what seems like a death sentence except you don’t die. Not really.
This post is full of twelve years of CIDP wisdom and meant for anyone, whether you were just diagnosed or you’ve been on your journey for years. Knowledge is power!
Before I go any further, let me be clear:
I am not a doctor. I am a CIDP patient. Twelve years. I have a severe, advanced case considered Stage 5 by The Mayo Clinic (Jacksonville, FL). I’ve gone from mere tingling in my feet to complete immobility. I use a wheelchair and an ECV scooter wherever I go. I am here to share my experiences in the hopes of enlightening you on your path to creating a better quality of life, even with CIDP.
Things to Understand and Ponder
If you were just diagnosed, let me say I am so sorry. Also, you are validated. You are seen. You are a Warrior.
There is a lot to learn about this disease. Treatment alone can take a while to find the right applications that work for you.
Consider what type of doctor diagnosed you. You really should be with a neurologist who specializes in rare diseases.
The diagnosis of CIDP can be very tricky. It took an entire year for me to have a solid diagnosis. Standard tests include: nerve conduction, electromyogram (EMG), lumbar puncture, and lots of blood labs. There could also be a muscle & nerve biopsy, genetic tests, and sensory tests, as necessary. FYI: CIDP can be easily confused with many other autoimmune diseases. Be patient if you are still testing after a few weeks or even months.
Once you are truly diagnosed with CIDP, please understand that this is a rare, incurable autoimmune disease. Rare means many doctors are not qualified to give long-term care in something they don’t understand; it’s not on their ‘radar’. Incurable means it cannot be cured, and you will live with this disease for the rest of your days, so proper treatment is crucial to maintain the patient’s quality of life. Autoimmune means the disease can flare or ‘attack’ at any given time, automatically.
Additionally, it is very common that once you truly have an autoimmune disease that it will trigger other autoimmune diseases. The only way to know is to go down the rabbit hole of tests and labs to disqualify each possible second disease.
You should step back a moment and make a list of all concerns you have, then move them around to prioritize what needs to be worked on first. I have kept a notebook on my phone full of every step of my journey since 2015. It has kept things organized and understandable along my rocky road, both to me and my healthcare team.
Realize that not everything can be worked on all at once. If you make a list and understand what needs ‘priority help’, you can create a day-by-day schedule and feel in better control.
Last, no matter what advice you receive in our gracious CIDP community, mine included, all your concerns need to be shared with your health care professionals first. Our patient community can only offer support. The doctors are the ones who will be taking care of you.
Important: If you feel your doctor isn’t listening, you may need to find another medical professional. This is a serious disease that requires your voice as well as the doctor’s. You have begun a long-term relationship and it cannot become one-sided or it will fail as time wears on.
Here is a great website for research to understand what CIDP is and what resources are available:
GBS/CIDP Foundation International
You’re Not Crazy – You’re Recreating
I remember in the beginning of my diagnosis when everything in my head began spinning out of control. I couldn’t grasp the disease, how it was disabling me and the independent control I was about to lose.
I never went to counseling but let me strongly suggest that if you can’t mentally handle this new life you never asked for, SEEK HELP. So many times, we are deep in the treatment and physical side of trying to move ahead that we forget the mental side of things. Our mental health is just as important, maybe even more.
Embrace. Embracing I had an incurable disease was something I had to accept before I could really move ahead with healing mentally. Having an incurable disease is like grieving death. You go through the cycles of grievance except it never truly ends. To accept who you are now and what has happened, you have to embrace everything. The disease, the devastation, the support you need, the new life you have to create …all of it. This does not happen overnight but if you consciously work on embracing the truth, your mentality will prepare you to move ahead with clarity.
Purpose. I had the great fortune of doing some patient advocacy work on a podcast and met my very first friend who had CIDP. We were both being interviewed and she brought up that she went through a dark period where she felt useless but couldn’t put her finger on it. In a flash of wisdom, one day she realized what she was feeling was ‘lack of purpose’ in society. Her statement went through me like a lightning bolt. I had been feeling the same. As I worked through not only what that meant to my life now but how I could fix it, the dark storm clouds began to subside. Finding a new purpose in life can be difficult as you start experimenting with what skills you have that can be used to bring you peace. It took me six years to realize that after almost fifty-years of professional theatre and becoming a director and choreographer, I was still a story teller. That led me to making a commitment to be an author. And here we are!
Recreating. You may not realize it, but from the very moment of your diagnosis, you began recreating your life. The thought of losing your former life to something like CIDP is extremely painful. I can tell you this: the pain will subside but it takes you being consciously aware of creating a new life. One that gives you joy and happiness and allows you to keep doing things you love but within your new limitations. I fought letting go for a long time, but once I truly did, peace flooded my every day. It’s not magic but it is necessary.
Warrior. Let me honorably dub you with, “You are a Warrior! A CIDP Warrior!” I know you might be thinking, “What the actual hell?” The truth is, you have more power and resilience than you have ever dreamt possible inside you. Right now. It’s waiting to get out. You can beat the small things, sometimes the big things, sometimes an entire day full of crap! You just have to will it. Believe it. Be it. FYI: our CIDP Warrior mascot is the sea turtle!
Treatment Ups and Downs
Treatment is not a quick fix. With CIDP, there is no such thing. The goal with this incurable disease is to get you set up for effective long-term treatment that improves the quality of your life.
It is important to understand that with CIDP, there are two roads of treatment that must happen simultaneously; one for trying to slow or pause the disease. This is usually temporary but can help the disease move much slower. The second road is for all the symptoms of CIDP; tingling, weakness, swelling, fatigue, etc.
Steroids. In most cases, steroids are the first line treatment for CIDP. For me, they worked but only for a little while. Unfortunately, they are also a fallback drug when a medical provider doesn’t know what else to do if some other treatment isn’t working. I was on a high dose of Prednisone for 8 years. It resulted in osteoporosis, a hip replacement, and 2 spinal reconstructions. My advice is to avoid this treatment at all costs if being considered for long-term. FYI: Many insurance companies will not let you go on to higher powered medications for CIDP until 3 months of being on Prednisone shows you need more than the steroids.
IVIG. This is a special immunoglobin (IG) administered by IV. It is the standard treatment for CIDP. It involves a pump infusion and is done at a clinic or in-home with a nurse. The amount you receive is based on your body weight and a certain recurring time schedule. The IVIG journey is different for every patient. It is a cumulative drug and you shouldn’t miss doses. It can take up to 2-3 months to show any effect. Important: IVIG is used to treat the disease, not the symptoms. If it does help symptoms, all the better.
The SubQ version of this same immunoglobin medication is administered in the belly. It should be the exact same amount as regular IVIG. Do your homework and be sure that it is. If not, ask why. Whether administered by IV or SubQ, the physical results should be the same.
Plasmapheresis. In my case, IVIG worked great but flat-lined after 8 years. My neurologist replaced the IVIG with Plasmapheresis treatments. Research what Plasmapheresis is. It is a more dramatic treatment, but I had better results with it as a baseline treatment.
Vyvgart Hytrulo (VH). This is the newest drug in town, released August 2024. It’s been a game changer for me. When IVIG and plasmapheresis no longer worked for me, I started VH. It’s a Sub-Q injection once a week and only takes 90 seconds. The FDA just made it available in prefilled syringes so you can inject yourself on your own schedule. No more in-home nurse or clinic! Talk to your doctor about it. Do some research yourself:
Symptoms. The second road of treatment is for all symptoms. Tingling, nerve pain, swelling, muscle weakness, fatigue and more. Treatment is usually in the form of pain meds, Rituximab, immunosuppressants (like Mycophenolate) and others, pending symptoms. FYI: these mediations only mask the awful feelings that symptoms bring. They do not ‘cure’ anything.
Trying to figure out what medication(s), what times it is administered, and if it actually works takes a while. Be patient. Many treatments can take up to 2-3 months before benefits are actually felt.
I hope this information helps to understand and unravel the mystery of CIDP a little better. Remember, you are a Warrior! Thank you to all in our CIDP community for showing so much care for everyone around the world especially our new friends. You are loved!
#
Note: The sources of this article are based on one and a half years of my reply posts on Reddit, a social media platform that has open communities for conversation. In 2024, I set up a CIDP community when I realized there wasn’t one. We are now 344 members strong! If you’ve never been on Reddit, it’s easy to create an account. Once you do, please join our community at r/CIDPandMe.
Namaste,
Scott 🤗