Reply To: Anyone with Sensory Predominant CIDP?

Hi,

Yes I have CIDP (chronic inflammatory sensory demyelinating polyradiculoneuropathy) It is very rare (one case in 1m). I have had IVIg (borderline response) twice, been on steroids (no luck) and now I have plasma exchange every three weeks, originally over 5 days several times, then over 4 (just the one time) and then over three days it three wasn’t enough so I am going back up to 4 days when i’m next in hospital. We’re trying to get funding for Rituximab (not easy) and if we don’t have luck there I will have a Portacath inserted and I think the plan is every three weeks of two days of PE. I get a lot of pain, sharp, cutting in pain, stinging sore feet, pain and prickles in the hands (feet and hands also go purple (autonomic neuropathy), burning, prickles, crawling, tightness and pain in my nose, forehead, head, shooting pains in my head, cutting in pain in my neck etc, tightness, pulling etc around my gums too. I hope this helps. People who respond to PE generally respond to Rituximab which in some cases pushes the condition into remission. It’s a long road! I work.

O.