Anyone heard of this approach? (IVIG related)

hi all,

I've posted before about my Ivig treatment, but just as a quick summary:

Mid-dec 2012 - 5 day slow rate Ivig - highest count 22 & lasted 1 week before crashing
End dec 2012 - 2day faster rate Ivig - highest count 55 & lasted 2 weeks
Mid jan 2013 - 2day fast rate - highest count 136 and lasted 3 weeks
Mid feb 2013 - 2day fast rate - highest count 207 and on track to last maybe a little longer ( I hope!)

I saw my consultant today -he wants to try a one-quarter dose of the Ivig (30mg in a day rather than 120mg over 2 days), scheduled every 3 weeks. Rather than the current strategy of waiting to drop below 20 & then doing a full dose. He's going to review in 6 weeks and see if my counts are good. I asked about other treatments, but he said that for now he's very reluctant to begin rituximab or consider splenectomy, which back at the end of December were hi lighted as my next two options to choose from.

I can't find any info about differing infusions rates or longer term Ivig therapy in ITP. Has anyone else experienced anything similar? Or know of anywhere on the net with any further info about this type of therapy for ITP? Am I being given false hope that this might bring about a remission?

Kat:

I have never read anywhere that IVIG can cause remission. If there have been any people who sustained counts after frequent IVIG, I would think it's only because the ITP resolved spontaneously while they were in the middle of it.

Some people manage ITP by using IVIG, but usually only when all else has failed. Due to the time and expense involved, it's a difficult treatment to keep up with long-term, which is why most go to the other options and use IVIG for rescue situations.

Thanks sandi - I guess if you haven't heard of it no-one has! Lol!

I can't find any evidence base for using a lower dosage anywhere - even when using Ivig as nothing else works. My consultant feels I'm improving with each Ivig - I wonder if he thinks I might have a spontaneous recovery as I'm still only 3 mths into this journey. I'm not convinced as my counts are still dropping way down after treatment. Guess only time will tell.... Hmmmmmmmmm

I have no idea. I've truly never seen any doctor ever go with that approach. It's not necessarily wrong if you've got the time, the insurance coverage and the patience!

I have the time & I'm very lucky in that I live in the uk so all the treatment is free.

Patience however....... Not my forte!!!!

Will see how it goes. Tanks for your insight sandi - really appreciate it

IVG did not totally cure my ITP but it deff did caused remission for about a solid 6 months now and counting now when prednisone and rituxan couldn't and in my honest opinion is the best treatment..just my two cents though

Well 2 weeks in & my counts are down to 31. Not too bad but next week will tell

Thanks for sharing jwest & I hope your remission counties for a long time to come