Reply To: Unknown prognosis

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.