Informative CIDP Video

    • BryanF
      May 5, 2017 at 3:01 pm

      Among other things, this neurologist says that CIDP that involves a large degree of motor control issues responds better to IVIG than it does to steroids. Interesting….

      I have no idea if this is right or wrong, but in my case it might offer a reason as to why prednisone hasn’t kept my CIDP in check.

    • BryanF
      May 5, 2017 at 4:48 pm

      Also, from an article I think linked by Jim, regarding prednisone.

      http://emedicine.medscape.com/article/1172965-medication#2

      “Oral corticosteroid that suppresses inflammation and immune responses by altering protein synthesis in cells. Naturally occurring hormone that crosses cell membranes to bind to cytoplasmic receptors. Some mechanisms of action in CIDP are altering mediator function at site of inflammation and suppressing immune response.
      Studies have shown that 6 months of pulsed dexamethasone or 8 months of daily prednisone can achieve long-term remission in over 25% of patients.”

    • SandraP
      May 5, 2017 at 8:42 pm

      I would never be able to tolerate those doses of steroids. I already have osteoporosis and that much steroid in any form would destroy what’s left of my bones. And the oral doses would destroy my stomach. I have significant motor control issues, so I hope IVIG comtinues to help me.

    • BryanF
      May 5, 2017 at 11:09 pm

      I have no idea how much the above info holds true. But, in my case, I seem to respond to IVIG. My symptoms include sensory loss, but it turns into motor control issues shortly thereafter.

      Might explain why the prednisone doesn’t seem to work. But I am going to ask my neurologist about the 25% remission rate from steroids. I’d be willing to stay on prednisone, side effects and all for 3 more months if there is even the slightest chance of remission.

    • LMayberry
      May 6, 2017 at 11:58 am

      I have had only one five day course of IVig from March 29 to April 2. Then my Neuro put me on five days of Prednisone April 19-23, which seemed to help more in giving back strength and some sensation, but it is wearing off already. Ny neuro said he would re-evaluate me mid June to determine further treatment, but I am feeling serverely under treated at this time.

      I have Type II diabetes, so the steroids are not a good choice for me. I have had six months of steroid implants in my right eye for retinal bleeding, which added about 20 pounds, and the five days of Prednisone added another five pounds.

      I am still theee month away from being evaluated by the UC Irvine Neuromuscular Center to try to confirm the CIDP diagnosis to make Blue Shield happy about paying for all of this. They denied paying for some of the blood tests ordered which cost me about $600. The IVig cost me $1400 in copays, so I really can’t afford all of this.

    • BryanF
      May 6, 2017 at 12:26 pm

      LMayberry,

      Give this a try. Grifols is the parent company for Gamunex. They have an assistance program. Call (888) 694-2686 M-F 8a/8p EST

      Worth a try.

      Bryan

    • LMayberry
      May 6, 2017 at 12:47 pm

      Bryan

      Thanks for the number. Just have to get the neuro to prescribe then figure out how to get the infusion done. Trying to find out if my insurance will cover SCig, since my SNF won’t allow IVig in the facility. Shouldn’t be any harder to give than insulin, but if no FDA approval, the insurance probably won’t approve.