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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Posted by sherlock @sherlock, Jan 6, 2019

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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harley22 | @harley22 | 2 days ago
In reply to @reubenwithcidp "I have CIDP and have been on IVIG infusions every 3 weeks for about a year..." + (show)
@reubenwithcidp

I have CIDP and have been on IVIG infusions every 3 weeks for about a year with minor gains. I was diagnosed when my neurologist did the EMG. He caught that there were very different responses in my legs and ordered a spinal tap to confirm the diagnosis. I think the spinal tap is the key to confirming if this is the issue. I watch the threads for other treatments, but nothing seems to work consistently and individual effects vary considerably. Good luck!

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I also have CIDP and went thru 8 mos of IVIG with no relief at all.
Also stopped Gabapentin 2400 mg for over a year, with no relief from that either.
Will be starting Rituxan infusions with a new neurologist shortly.
Hope that helps me

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kgitti | @kgitti | 22 hours ago

What are your symptoms? I look forward to your experience with Rituxan.

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kgitti | @kgitti | 22 hours ago

I’ve been on Gabapebtin preceding the CIDP and IVIG and periodic steroids for the CIDP a couple of years and now SCIG Hizentra for like a year and a half with weekly at home self infusions. I’m 74 and have a pretty active full life as an editorial photographer. The infusions definitely have worked. There were some bureocratic problems in the switch over from the IVIG to the SCIG and I went 6 weeks without any. I was bed ridden without them so I know their value.

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