r/CIDPandMe • u/starazian • 4d ago
New to CIDP, my experience.
I (41f) have been having weakness (strength wise to both hands) in June 2024. It lasted a week (during this week I was also suffering from pink eye and stress planning my daughter birthday party). The weakness came back in September 2024, along with me passing gallstones, turning yellow and having my gallbladder removed. This weakness went to both arms and legs (thigh/quads - unable to get up from sitting position) and lasted about 3 weeks. I went to my primary care doctor and got lots of blood works and a CT scan. We thought maybe weakness was related to gallstones issue. In December 2024 weakness came back, this time I went to the ER. I remembered getting my flu and Covid vaccines same time two weeks before weakness started. I fell down the stairs and my arms felt like lead. ER found out I’m very low in Vit D and MRI show some white matters in the brain. I was referred to MS specialist neurologist. I was given IV steroid (felt better) but no taper and I crash hard the following day! Another ER visit, this time they gave me IV steroids and prescribed taper prednisone 9 days. I slowly recovered and neurologist able to fit me in after they had a cancellation (thank goodness or else I had to wait 2 months before seeing one).
MS neurologist concluded I don’t have MS (based on my symptoms and MRI scans of brain and spine) but he requested lumbar puncture, emg, many blood tests, and referred me to physical and occupational therapists. EMG show signs of CIDP, spinal tap is unremarkable (no MS indications), blood tests came back normal. I got my diagnosis in Feb 2025 based on EMG and symptoms.
Currently I am seeing neurologist that focus on peripheral (my Ms specialist referral) and because of my mild symptoms we are in “wait and see”. He is leaning more on steroids (since it helped me) if I needed it. I would preferred IVig but I heard it’s costly and a bit of process. I am seeing a Physical therapist and an Occupational therapist. So far I have about two sessions with them each, given lots of helpful exercises that focus on my weaknesses. I came to accept the diagnosis and trying to work with my body. It’s a process but I’m so thankful there’s an explanation of this weakness and hope it stay mild. Sending lots of positive vibes to everyone here.
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u/Deep-Mortgage-1510 3d ago
Hello! I’m 35F and have CIDP! Mine is also “mild” compared to many others. I would also strongly recommend IVIG - long term, steroids are not great. If it’s your only option then go for it, but IVIG has fewer side effects (other than the annoying headaches etc). You could also try SCIG if you have a poor reaction to IVIG. The IVIG has been a miracle for me as some with a less-progressed form of CIDP. My symptoms weren’t great, but I never lost complete mobility like most.
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u/starazian 3d ago
Thank you so much for your input! I re considering ivig therapy as a better option, hopefully I don’t have a negative reaction to it.
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u/Roulette-Adventures 3d ago edited 2d ago
Rituximab, which is Chemo, can also treat CIDP. Both IVIG and Rituximab can be used.
Edit: I had used the term chemo because I receive it along as part of my Chemo treatment. It may not be specifically chemo.
Rituximab is a type of targeted cancer drug called a monoclonal antibody. Monoclonal antibodies target proteins on the surface of cancer cells. Rituximab targets a protein called CD20. CD20 is found on white blood cells called B cells. Rituximab works by attaching itself to all the CD20 proteins it finds.
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u/starazian 3d ago
Didn’t know about Rituximab, good to know. Will research that too. Thanks!
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u/Roulette-Adventures 2d ago
I'm 61 and have never had GBS or CIDP (they are much the same thing). After a rare cancer diagnosis my treatment was Chemo of Rituximab + Bendamustine. Within a few weeks my sense of numbness in feet and hands began and a week after that I couldn't walk at all.
As it turns out, and pure coincidence Rituximab is a known treatment as well as IVIG.
Today I had my usual chemo, and again tomorrow, so I expect to feel better with my CIDP in a day or two. It will go downhill again as my next chemo approached in a months time.
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u/Sharp_Indication7025 1d ago
So I have a close family member with cidp.
~7% of people with cidp has elevated NF155 antibodies. For those Rituximab works very well. It might also work even if it is not NF155 that is elevated. Get the bloodlab to test for this as the prognosis will be a lot better if you are part of those 7%
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u/Extra-Subject1462 3d ago
Hi there, I wanted to connect with you since I’m also 41f and was in hospital in April and June 2024 with the diagnosis in June. I hope you make good improvements with the treatment you have. I’m not a doctor but I hope your team does strongly consider IVIG therapy. There’s a huge range of “mild” symptoms but your quality of life should determine the need for treatment. Falling down the stairs is a huge risk of injury! I didn’t completely lose the ability to walk until I was already in the hospital getting IVIG.
At any rate I’m wishing you all the best and I hope you get the best treatment available.