Low dose IVIG and inflammation

[pamsboy]

Can anyone explain the thinking behind lower dose IVIG being pro-inflammatory and causing symptoms to worsen? And would 800mg/kg be considered lower dose? My son has onset of rages, ocd, odd, vocal tics after ivig lasting about a month. We've never done higher than that dose. Also which doctor has a good handle on how to deal with this issue?

 

I know there are several people on this board who have had worsening with lower dose - did the opposite happen when you went to higher dose?

 

thanks,Pam

[nevergiveup]

Pamsboy, My dd's first ivig which was one gram per kilogram, helped about 9 days then strange unseen symptoms started to happen. But we retested her antibrain antibodies and they began to increase so we have now done 11 ivigs at about your sons dose. We did not see great imrpovement until the third dose or so. Cannot say that the low dose causes symptoms, rather alleviates them temporarily, she starts feeling bad again right before her next dose. Did you have the igenex test? Some of the kids whom did not do well on monthly ivig had lymes. Which ivig will not help. So hopefully as the parents from this forum answer your question they will identify themselves if their child has lyme so as not confuse you. My immunologists says you need to give it 6 months, however she also says that in order for ivig to help autoimmune diseases the child must maintain an igg level of around 1700. Very high. But the side effects of ivig seem to make the pandas symptoms worse, so we are on a gradual increase of gammagard over the next 6 months to reach the 1700 iggs consistently, and she receives ivig every 21 days. Her lowest level is about 1200 IGG'S during the third week. But if she gets a fever, neck ache headache from the infusion her pandas symptoms flair big time, so its a balance. The inflammatory part of ivig is the first few days when you produce a fever and the lining of your brain inflames(asceptic meningistis). Slow infusions help reduce this. Plus a gradual increase in dosage does too.

[melanie]

I totally agree We do 1 g per kilo or 60 grams every 21 days.

[peglem]

Can anyone explain the thinking behind lower dose IVIG being pro-inflammatory and causing symptoms to worsen? And would 800mg/kg be considered lower dose? My son has onset of rages, ocd, odd, vocal tics after ivig lasting about a month. We've never done higher than that dose. Also which doctor has a good handle on how to deal with this issue?

 

I know there are several people on this board who have had worsening with lower dose - did the opposite happen when you went to higher dose?

 

thanks,Pam

Our 1st 2 IVIGs were very low dose- less than .5g/kg, and my daughter got worse very quickly. We've had 5 IVIGs subsequently at 1.5g/kg and have had improvement w/ the higher dose. Can't comment on the 800mg/kg dosage as I have no experience w/ that.

Here's a link to the thread where my experience w/ low dose is discussed. It also has some links to literature on it.

http://www.latitudes.org/forums/index.php?showtopic=7868&st=0&p=64034&fromsearch=1entry64034