IVIG dependent CIDP

    • September 2, 2014 at 5:33 pm

      Has anyone heard of IVIG dependent CIDP? it was explained to us that for some people the only thing that works is IVIG and nothing else. And if that’s the case then stem cell transplant won’t work.

    • September 2, 2014 at 5:52 pm

      Somebody more experienced than me will probably clear this up, but in my opinion IVIG and SCT are in no way related and work in totally different ways, (ie. completely independent of each other)

    • GH
      September 2, 2014 at 9:43 pm

      I don’t know how anybody but the researchers working on the stem cell procedure would know what would work for you, and then only if you were their patient. Isn’t that still in clinical trials?

    • jk
      September 7, 2014 at 1:30 pm

      Yes, I have heard of it.

      “..it was explained to us…” and how much credibility do these explainers have?

      Personally, I might consider myself IVIG dependent, if and only if, I have tried and failed (and have been given them by a neuromuscular CIDP specialist) all of these:

      Pub Med Central Theraputic Advances in Neurological Disorders by Kenneth C. Gorson corresponding author
      Department of Neurology, St. Elizabeth’s Medical Center, 736 Cambridge Street, Boston, MA 02135, USA
      Nov 2012; 5(6): 359–373.

      Table 5.

      Therapy for chronic inflammatory demyelinating polyneuropathy.
      Proven therapies from randomized controlled trials: Level I evidence [Ashman and Gronseth, 2012]
      Plasma exchange
      Pulse oral dexamethasone

      Therapies ineffective based upon randomized controlled trials: Level I evidence; These studies all had difficulties in trial design:
      Interferon B1a (Level II evidence)

      Therapies of unproven benefit but probably helpful as steroid sparing agents, based upon clinical experience, and > 1 case series: Level IV evidence
      Cyclosporine A

      Other therapies of unproven benefit: Level IV evidence
      Mycophenolate mofetil
      Pulse weekly oral prednisolone
      Pulse weekly oral dexamethasone
      Pulse weekly intravenous methylprednisolone
      Interferon alpha 2a
      Hematopoietic stem cell transplantation end quote.

      Finally, I suggest that your conclusion “… And if that’s the case then stem cell transplant won’t work.” is neither factually based nor a correct conclusion based solely on the presumption of being “ivig dependent.”

    • September 8, 2014 at 2:52 pm

      there was a fellow I met at the infusion center that has had cidp for >10 years who had to have ivig every 3 weeks or he ended up in the hospital

      so I guess he had “ivig dependent cidp”…his insurance always denied a prior authorization request every year until he ended up in an ICU bed, then OK’d ivig for another whole year…sad state of affairs for our health care system