A Common Steroid Protocol

Hello Took,

Let me give you some background information and then try to answer your specific questions. While I am doing this from memory, I am pretty sure that I am close to right. I will check and make amendments later.

When starting with steroids, the first step is often infusions of Solumedrol, with 0.5 g to 1 g infused each day for 5 days. The next step is to start with prednisone or methylprednisone at a dose of between 0.5 to 1 mg/kg body mass every other day for 1 to 3 months. The next step is to reduce the dose until things start to get worse, and then adjust until things are improving or at least at an even keel. There are other protocols. For example, Dr. Gareth Parry at the University of Minnesota uses an even more aggressive approach. Your neurologist can e-mail him for the details.

The steroids are very strong anti-inflammatory drugs. They are also immunosuppressants. However, the immunosuppression is not as immediate as the anti-inflammation, so it takes a while to notice if it works.
If your CIDP has a strong inflammatory component, then administering large doses up front should beat down the inflammation and should do so pretty quickly. If your CIDP has a strong antibody attack, steroids might help beat it down as well.

I think it is unusual to increase prednisone dosages in treating CIDP. Usually, you want a full frontal attack, that is, large doses. Doing so does two things: it helps let the body start healing by reducing the inflammation as much as possible and it helps determine if the treatment is going to be helpful at all.

Now, as to the specific questions. Steroids can stop demyelination, because they are immunosuppressants. They seem to cause T-cells to die earlier than they would on their own, thus reducing their overall number. The subtlety is that the immune system is so complicated that simply getting some T-cells to die early may not be effective.

Many doctors worry about using PE because it is considered invasive. And compared to taking some drugs or having an infusion, it is. If you are willing to deal with the invasion, though, it is a treatment worth a try.

In my case, I started with the steroid protocol I mentioned above. That worked for a month or so, but then became progressively less effective over the next two months. I then tried PE while tapering off the steroids. The PE was very effective, although the time between relapses was quite short. I am reluctant to give advice because the disease course is so different for everybody. Still, I would talk with your doctor about trying a steroid protocol more like what I outlined above and if that does not provide improvement soon, moving on to PE or IVIg. Alternatively, you could switch now to the other protocols. The Peripheral Nerve Society has a set of protocols that is widely, if not universally accepted: ([url]http://www.pnsociety.com/Guidelines_CIDP.pdf)[/url].

Godspeed in finding relief soon,
MarkEns