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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
I have been in treatment for CIDP going on 3 years. The treatment is IVIG infusions 2days a month. I also have small fiber neuropathy. I don't take any meds for this condition except CBD. CBD with lidocaine and some THC at bedtime. I can't take any of the first tier drugs like lyrica. Here's my question: Have any of you been treated for neuropathy with IVIG infusions?
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How did you all get diagnosed with CIDP?
I have been trying to get help for my husband's peripheral neuropathy for 7 months!
He has had the nerve test and he does have PN but I need to know WHY!!
He needs to get better with his pain and walking!
I cannot find a doctor to do a nerve biopsy.
He already had a spinal tap that shows elevated protien.
MAYO in AZ is not taking new neuro patients!
Don’t forget that you can regulate the drip rate. I insist on 110 for my drip rate. It may take longer, but I have fewer migraines. I remind the nurses every time because they might miss it on my chart. I know someone thatndoes the IVIG over 2 days. Good luck!
My hands are numb! I understand what you are going through. I keep cutting them while cutting carrots and onions to look down. And blood everywhere. Then go to ER to get stitches. IVIG does not cure the neuropathy but it slows down the progression of the disease. According to the medical journal of neurology takes 8 months to one year for it to work. . You have to remain on it for life. If you go off of IVIG it can fast track your symptoms. I have heard of Rituxan being used to treat RA and Lupus and other diseases but not neuropathy. You are not the first person trying it for neuropathy it’s an off label use my understanding.
Try looking for a neuromuscular neurologist. That’s what I was told along with immunologist. These doctors don’t like to order test. I am talking to my neurologist about testing by spinal tap for CIDP. This is mainly a men’s disease. 96% are men very few for women. That’s according to statistics
Try Mayo in Rochester MN my understanding larger clinic. I don’t know where you live but Dr Anne Oaklander practices in Boston, Florida and one other state. It’s frustrating trying to get medical treatment for this.
Has he had the skin biopsy? Had it done twice progressively worse second time.
There are several different causes for neuropathy. Chemo,
Medication induced like statins, idiopathic and autoimmune.
Go to the list medications. Gives other information https://www.foundationforpn.org/wp-content/uploads/2016/10/Medications-that-Can-Cause-Peripheral-Neuropathy.pdf
Thank you. We live in Southern New Mexico.
He had a spinal tap but no skin biopsy. He needs a nerve biopsy but I cannot find a doctor to do one in Las Cruces, NM or El Paso, TX
The neuro washed his hands and said it was hereditary. It is not hereditary- he had a genetic test from a different doctor. He has had so many deep dive blood tests. It is not a lack of vitamins, he does not have diabetes, it is not his spine, he has not had chemo.
Mine is autoimmune.
My sed rate, esr, crp and Complement C3 all elevated.
I have a list of labs Dr Anne Oaklander sent me that I had to have ran before I saw her.. I can send them to you. My rheumatologist ran the labs for me.