Has anyone really gotten over CIDP?

Harley have you had Rituxan infusions? It’s the next step in treatment when IVIG isn’t working. I’m in the Phoenix area. If you are too, I have a great neurologist here. I am starting Rituxan for the same reason. IVIG is keeping me barely walking around house with walker. but I am getting worse in spite of it. I do hope you can try the Rituxan. And steroids are possible as long as your BP is treated and stays in control. You might discuss both options with your neurologist. I wish you improvement and totally understand the frustration and quality of life decline.

Please keep us informed about your experience with Rituxan as it progresses. That may be the next step for many of us.
And see my other post about the AN variant “autoimmune nodopathies“, really only defined in 2022. IVIG is much less successful with it and Rituxan appears more successful. https://academic.oup.com/brain/article/144/4/1043/6272065
I’m also curious about your insurance experience with the switch to Rituxan from IVIG.

There are several blood tests that can be helpful in addition to the EMG test. All standard causes of peripheral neuropathy, including diabetes, low thyroid, folate and B12 deficiency and excess alcohol intake should be tested for since they are all treatable. There are inflammatory markers in the serum ( sed rate and CRP) and specific antibodies that cause demyelination and nerve damage. A spinal tap can show high protein levels but normal levels can occur in CIDP. Having one autoimmune disease increases the chance of having others, and I think it is prudent to have a rheumatologist on your team and be checked for other autoimmune diseases, some of which cause peripheral neuropathy themselves, like lupus, rheumatoid arthritis and mixed connective tissue disease. These can cause muscle inflammation also (myositis) which can be ruled out with CK and aldolase blood tests (muscle enzymes). That’s a lot of blood tests but would provide a comprehensive picture of the situation and perhaps some of what shows up might be treatable. The inflammation and cytokine release is what causes the exhaustion. I believe in leaving no stone unturned and treating every treatable factor for the best outcome.

Thank you for your reply.
My Neuro here in Florida wanted me to start Rituximab infusions but my insurance wouldn’t cover them, and I had a 700.00 copay each infusion.
If I knew they would help me, I would pay out of pocket for them.
Right now I will be moving to Scottsdale AZ as soon as my house is ready.
It will be sometime between 7-8 mos maybe.
I’m in a quandary because do I start something here, or wait til I get to Scottsdale.
I will be needing a neurologist there, and I would gladly take any recommendations for one from you.
Thank you for your help!

Dailyhope, coping with an illness like this is a huge challenge, I am sure for all of us. I too spend much of my day in recliner or on couch, but I try to keep busy. Focusing on helping others, like through this forum, makes me feel like I’m doing something worthwhile and takes the focus off my own problems. I do best in the morning so I try to get done what is essential then. I pace myself alternating hard and easy tasks. I can’t stand or walk very well so I try to be efficient with trips across the house and do tasks like meal prep sitting down. I also plan one enjoyable thing every day so I have something to look forward to, something fun or creative. Getting outside is important to me, as is going somewhere even if it’s an errand. I’m lucky to have a great husband and I say thanks and show appreciation for all he does for me. In spite of my best efforts I get down at times and allow myself to cry or be angry for awhile. It’s helpful to have a therapist to talk to and put things in a more positive perspective. I have been ill for 40 years so I’ve had a long time to work on ways to cope. CIDP for probably 12-15 years, but Guillain Barre following Covid really took me down last summer. I hope some of this helps you and treatment gets you to feeling better. Strength and hugs to you!

Harley, I am 10 minutes from Scottsdale in Fountain Hills and the neurologist is in Scottsdale, Dr Sivakumar. He has superb credentials and is a neuromuscular specialist, very knowledgeable about CIDP. Drs can do a lot of arm twisting with insurance companies if you ask and they are willing (appeals, etc) Many of the pharmaceutical companies have patient assistance programs that cover the cost or your copays if you meet the financial criteria. Most of those are reasonable, not at poverty levels. Look up the company that makes Rituxan and call them. It’s worth starting it there, as you get 2 infusions 2 weeks apart then wait 6 months for the next. I hope you make some progress with this and your move to AZ goes smoothly. I am happy to help you out when you get here or provide more information prior to your move. Good luck, take care!

PS another blood test for MGUS should be done, a serum protein electrophoresis. It checks for an abnormal protein (M spike) that can also cause peripheral neuropathy. MGUS is not typically treated, just monitored with blood tests, but it is sometimes helpful if you have it to get things approved by insurance (having a dual diagnosis). My IVIG was denied for CIDP but approved for MGUS neuropathy since I have both.

Waking up with your face in a puddle of cold saliva is awful! I have recently started drooling (yuck) in my sleep and am wondering if anyone else has this? Are my mouth or swallowing muscles getting weak now? Thank goodness it’s not happening during the day!

@slkanowitz
This is so very helpful❣️ Thank you for taking the time to share your coping methods with me. Managing limited energy, not just time, is really important. It is wonderful your husband is so helpful and supportive. Bless his heart! I am fortunate my ex-husband is helping me with some things at my home and with our teenage son and my dogs/cats. I can’t really do much now which is really depressing because I used to be so productive and energetic. My faith is my foundation and I am just taking one day at a time now. I have had to accept my limitations and thank God for the little things every day. May God bless you❣️

@slkanowitz
I have also had the excessive drooling overnight and think it could be tied to nerves connected to salivation. Not fun waking up in a cold puddle on your pillow! 🙂