February 23, 2012 at 5:43 pm

Hi lori222 and exosurf, I don’t want to be putting wrong info out, my math is not the best. I think .04 is a unit of microgram measurement which is the same as 1 gram. Check on your orders if it says .04g or.04mg. In any event 1g/kg is a maint dose half of a load. The only reason we are getting a little less is because of several reasons, we are growing and have not increased with weight gain from initial dose, he is doing well on the old prescription and we are going to try to wean off again this summer. So if you are 120lbs, you are 55 kg a load would be 109 grams. You are getting 100grams in 40 days, 25g every 10 days (on the premise of 42 days being a full life) You are 9 grams short of a load but two days early on the 42 day full life. Numbers and days are irrelevant though, it all should be based on your invidual needs. 42 days may not be a full life for you, 28 may be or maybe your relapses could be 6 months apart, everyone is different than the published life numbers of 42 days. So you are pretty much getting 2g/kg right now, just spread over a shorter period of time (frequency). Some people get more than 2g/kg because they need it, others have to include other protocols, such as ivig and imunosuppressants, one person on the site needed the ivig and solumedrol. Some use cell cept, imuron, cytoxan, rytoxan, pe in conjunction with ivig.

You asked about the progressive/relapsing difference. Those on the site with the progressive seem to just stabilize with ivig, not really see a marked improvement. It pretty much just slows or stops the progression but does not really allow for repair. Those people have usually exhausted the standard protocols. There are more experienced people who have this form that are better equipped to answer detailed questions, I can only offer what I have researched but not experienced. Those groups of people are the group that has tried the cytoxan protocol or the autologus stem cell procedure being done at Northwestern Univ. in Chicago. Linda M has been on the new site, so maybe she will see this and respond with accurate, detailed info. Before qualifying for this trial, you have to have exhausted all other protocols and meet the qualifications. Others on the site two people I think have done just the cytoxan protocol and arrested their cidp. Each protocol takes vigilant research for weiging the risk/benefit for your own individual situation. Just remember, there is hope and a treatment out there, it just takes a bit of hard work to figure out what will work for you!