Reply To: IVIG frequency ?

WTF,

I have been diagnosed with CIDP for 6 1/2 years, so I have been at it a while. My main treatment is plasma exchange, but I did some research into IVIg. The European Federation of Neurological Societies and the the Peripheral Nerve Society have published these guidelines: http://www.pnsociety.com/Guidelines_CIDP.pdf. There are divergent views about treatment, of course, even among the doctors considered experts on CIDP, but this is a good place to start.

As far as your treatment goes, I think that it is close to the guidelines. You get 0.615 g/kg every two weeks. The guideline for maintenance is 1 g/kg every three weeks. That works out to nearly the same amount of IVIg. However, it is not working for you. I would not be unreasonable to try 1 g/kg every 2 weeks, or even to repeat the loading dose. Your initial loading dose seemed like it was a bit on the low side, 1.85 g/kg, and was administered over slightly too long a period. I mention it just for thoroughness; I am not sure I would make an issue of it with my doctor.

The sensory symptoms seem to be harder to treat and slower to respond to treatment. However, if you gain your strength back, there is a good chance that your sensory symptoms will abate some.

Treatment for some can be very effective very quickly. For others, no treatment works well at all. Nobody knows why. The best you can do is press you doctor for aggressive treatments. Ironically, though, you also have to be patient and allow time for the treatments to work. You have been at IVIg in a more or less normal protocol for three months. It is time to step it up to something more aggressive and give that another three or four months. If that does not work, it is time to try plasma exchange, corticosteroids, immunosuppressants, or some combination.

What worked best for me was a combination of plasma exchange, immunosuppression with azathioprine (Imuran), and a blast of prednisone, followed by a taper.

Godspeed in finding an effective treatment.
MarkEns