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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
Autoimmune Diseases | Last Active: Jun 15 10:28pm | Replies (371)Comment receiving replies
I am on Panzyga. I get it three days every three weeks.
That is the recommended dosage. 600 mls each day.
2mls/kg. Infusion time is six hours.
It makes a huge difference in my life. It helps my balance/dizziness and energy levels along with the muscle atrophy. I can finally sign my name due to the motor neuropathy my hands shook so bad I couldn’t write or sign my name.
My legs also have tremors. It gets better with the infusions.
Make sure it is given as directed by the manufacturer. Mine is autoimmune caused by my lupus, sojourns, mixed tissue disease and Hashimotos.
I have been diagnosed with several different types of neuropathy.
CIDP, dysautonomia, small fiber neuropathy, cardiac autonomic neuropathy, severe axonal sensorimotor peripheral polyneuropathy.
Cardiac autonomic neuropathy aka CAN causes blood pressure is either too high or low. It also causes arrhythmias bradycardia/tachycardia your heart beats too slow/or fast.
Neuropathy moves to anywhere in your body that you have nerves including your organs. I do not have as many arrhythmias as I used to since I started this.
I took IVIG from age 10-18. The neurologist said I should have never stopped it. She told me if I would have never stopped it I would not be in the shape I am in today.
She also told me I would be on it the rest of my life. Dr Anne Oaklander is a research neurologist. I live in Tx and went to Boston for answers. I was having problems with the motor neuropathy. It says movement disorder. They kept trying to diagnose me with Parkinson’s (negative) and then essential tremors. My tremors were due to the motor neuropathy. That’s sad I had to go to Boston to find out the truth.
I am 63.
Replies to "I am on Panzyga. I get it three days every three weeks. That is the recommended..."
I am having very similar symptoms post stem cell transplant for scleroderma. The BMT doctor said it was neuropathy, but no further evaluation. I will see a neurologist soon.
Post-transplant, I have very limited ability to walk that so far was not diagnosed as why. As I start walking at a normal pace, my lower abdomen gets tense, dizziness, my blood pressure goes up, shortness of breath, tingling. I also have some muscle weakness in the arms and legs and muscle wasting. Pins and needles with tingling. Systemic sclerosis may be causing autoimmune neuropathy.
Do my symptoms look similar to your condition? What is your walking ability and daily activities? Any insight will help. Thank you
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@artemis1886 Wow! I’ve never heard of one person having so many neuropathy serious diagnoses! I do have autonomic involvement, and with diagnosed Parkinson’s and diagnosed polyneuropathy, along with hypogammagobulinanemia, where I’m scheduled to undergo panzyga infusion, maybe I should investigate further, like you have! Your situation I find to be quite remarkable! You must have times when it is very difficult to function very well!! I’m glad the infusion’s are helping you, making your life a little bit easier, and I hope they will help me! Thank you for your info. and participation in this forum! Wishing the best for you!