Reply To: CMV AND GBS

We did loads for a year and then tapered off by 10 grams. The amount of time the ivig lasts is different for everyone. It has a 42 day cycle. That means 42 days is the most it works. Anything past that with no symptoms means your cidp relapse goes past the six weeks. Some people go 6 months, some relapse in a week. The best scenario is to stay a step ahead and never get to where your symptoms are apparent. Once you notice the signs, that means the demylienation has already started long before that. The healing process is a mm a day, but if you are noticing symptoms, you start from square one. Somewhere in the archives you can find out how many inches you heal in a year, I can’t remember how long ago I wrote that post but it is in there.
Regarding dose, if you weigh 125 divide that by 2.2, 125/2.2=56.8 So you weigh 57 kg to get a load you multiply by 2 so
57×2=114 A loading dose is 114 grams for you a maintenance dose is 57. So, if we were you, this is how we did it. 114grams over 4 days, so 28 grams a day for four days. We did that every six weeks for one year. The symptoms we had from a four day infussion were pretty bad, so then we did it every three weeks 28 grams two days in a row. As we started to taper down to a maint. dose we decreased by 10 grams each month and moved the treatment to every two weeks. So right now we are a little below a maint dose and it is given every two weeks over one day. I was just going by your weight and putting in our schedule. Frequency is sometimes more important in some patients than actual amount, to keep the titers more stable.

We have been on the maint dose (actually a little less than 1g/kg for more than a year now) Every so often we taper down again to nothing to see if we are in remission. Before we start the taper we always get a ncv/emg for a baseline so we have something to compare once the wean is complete. Thus far we have not been able to wean off, it has been 5 years. Hopefully puberty will be on our side and our immune system will rebalance.

Keep in mind everyone is different and the rate at which they use the ivig up is different for everyone. Not everyone responds to ivig, it is a process that takes a while to figure out. It also takes a while to figure out if you have the progressive form or the relapsing remitting form. Typically those with the progressive form do not see a marked improvement w/ivig, more of just a holding. Those groups of people usually find good results with the cytoxan protocol. It just takes patience to figure out a plan that works for you.