Unknown prognosis

    • Anonymous
      June 5, 2014 at 1:07 pm

      I just left the hospital where I was given an IVIG loading dose 900mgx2 days. Prior to this treatment the Dr would not rule out ALS.I am at home now waiting for any sign of strength coming back. I have another maintenance dose on July 2.In that time would you think I would have some strength back?

    • GH
      June 5, 2014 at 3:49 pm

      There is no way to predict your outcome, particularly as it seems you are very early in treatment. There is a great deal of variation between individual cases of CIDP, and it seems your diagnosis hasn’t even been nailed down yet. Did you have a spinal fluid test?

    • Anonymous
      June 5, 2014 at 5:46 pm

      Yes GH I had a spinal tap the first part of April this year. They told me that the protein level was very high, that’s when I got my first loading dose of IVIG. I am very fearful of my situation not knowing if my treatment will improve my strength, even the slightest bit. Just guess I will have to be patient.

    • jk
      June 5, 2014 at 6:46 pm

      From the NIH: “…The standard IVIg dosage is a loading dose of 2.0 gm/kg administered intravenously over 2–5 days, followed by 1 g/kg over 1 day every 3 weeks.”

      Now 2.0 gm = 2 grams = 2,000 mg. My math is a little rusty, anybody double check- Let’s assume you are 90kg.
      Therefore 2,000mg times 90 = 180,000 mg. Are you sure the 900mg you reported is correct? Perhaps you mistyped/misremembered?

      One expert later told me, “You did not get enough (IVIG) often enough.”

      Let me think, I recall receiving about 50g per day each day for 5 days. 250g = 250,000 mg. Hmmm, so I weighed more than 90kg at that time!

      Following my initial 5 days dose I had an immediate response as measured by the p/t dynamometer (I have discussed this elsewhere). The doctor discounted the improvement as ‘random.’

      During this time I also received an ALS diagnosis. When I confronted the Dr, the reply was. “I don’t know what else to put on the form!!!”

      For more from the NIH- An update on the management of chronic inflammatory demyelinating polyneuropathy:


      This study reports “…Patients with a progressive course or predominantly sensory deficits with tremor may be less likely to improve and, that 76% of IVIg-treated patients had improved strength [Mendell et al. 2001]. Improvement was noted as early as 10 days after therapy..

      Every case is different. Get yourself out of the hospital and into a neuromuscular Center of Excellence.

    • GH
      June 5, 2014 at 7:58 pm

      Jk is correct about the loading dosage for IvIg. Check this.

      Here is a link to a summary of treatments for CIDP, from Medscape: http://www.medscape.com/viewarticle/779102_4

      I had two five-day loading doses, about a week apart. While most CIDP patients respond to IvIg, it didn’t do much for me, so my primary treatment was switched to plasma exchange. Then I took prednisone in decreasing dosage over a year, and also Cellcept, which I still take three years out.

      Treatment must be individualized. The first step at this point is to see how you respond to the IvIg. Try to be patient — there is no quick fix. That does not mean you won’t have a good outcome in time.

    • Anonymous
      June 7, 2014 at 12:46 am

      Yes jk I should have put a decimal point after the first zero. One thing I know though was I was visiting the washroom once an hour!