How long did IVIG keep your PCs up?

Just curious, had 3 transfusions of immune globulin just over 2 weeks ago. I know everyone is different, but for those of you who've had it, and who's numbers increased how long before they started dropping again?

Dotty -
My son is 14 years old and has had ITP for 9 years. He responds really well to IVIG and has received it numerous times, although we stopped using it because of the side effects he also gets with IVIG. Anyway - the first couple of years, his general pattern after receiving IVIG would be to go up over 300k, then slowly drop until he would need another treatment an average of 12-16 weeks later (counts down below 15k). After a couple years of this, he actually was able to go one year between treatments of IVIG, before his count dropped below 15k. After that one year between treatments he was back to needing treatments more regularly and then IVIG stoped working as well for him and we switched to WinRho.

I'm not good at keeping records and we didn't have him checked every week when his counts were decent, but we would wait a month after knowing the IVIG initially got him above 300k and at that month mark his counts would have dropped to 200k. By eight weeks after infusion his count would be under 100k. After that it was anyone's guess how much longer he would go - no real rhyme or reason. And, as you mentioned, everyone is different.

Good luck and I hope your counts stay up!
Beth

After doing a bit of research I read that the median half-life of IGG is 3 weeks... not sure how relevant that is, I suppose it depends on what each body does with it, right?

I hate waiting and not knowing what my body is going to do in a week or two, tho. Ugh. Then again, I'm not totally convinced that it IS ITP and not DI- ITP (drug induced) since I had rapid onset symptoms 10 days into a course of bactrim... apparently my hema thinks ITP is more likely since I chewed up and spat out the platelet transfusion, but from what I read now that isn't inconsistent with DI-ITP.

Watch, wait, retest, watch wait, retest. Hating hating hating the pred side effects.

Doty,
I did the IVIG back in July (July 18 - July 30). I was in the hospital for two weeks in July and had about four IVIGs and one 4-day Decadron pulse. My platelets barely budged at first. Then I swithed doctors while in the hospital, and my Hemo did a very slow drip of IVIG--and finally my platelets went from about 1-2000 and up to 12000. But, it only lasted for about two weeks. My platelets fell back down to 1000 and I was entered into the hospital again around August 18. My new doctor was very upset since I wasn't responding to anything at that time. He did another IVIG over 24 hours and added the 4-day Decadron pulse (with 3 more added when I left the hospital).

During this time I had stopped taking Sinequan (which is known to drop your platelets). Finally, during the last IVIG and along with the Decadron pulses, my platelets started to rise and have stayed up in the 300,000 ever since. I had consulted with Dr. Liebman at USC during this time, and my Hemo is a former student of Dr. Liebman; so, my Hemo was given this treatment option by Dr. Liebman (one of the top Hemo specialist in the US).
So, it has been over 4 months and my platelets are staying up. Dr. Liebman recently emailed me that if I can make it to one year with normal platelets, then I have a 70% chance of my platelets staying up for five years. It still is scary not knowing what is going to happen. But, I still wonder if stopping the Sinequan has helped keep my platelets up.

DeeDee:)

Figured I'd put my own experience in here in case others are curious...

3 weeks and 2 days after my last transfusion counts down by a bit over 100k from the week before, but still "normal" range.

:side: HI Dotty,
Just a quick note on the ivig....my son has been getting the ivig for about 7 years now.
It usually lasts for about 4 weeks. He goes in once a month. We tried everything before
this, including a splenectomy. Usually kicks up the platelets 2 days after infusion and
he is good for the month, or if he gets sick his count will drop sooner. Everyone is diffrent! Good luck
Susie

I had IVIG on the 21st and 22nd December and 2 weeks later my counts were up to 36 and then another two weeks after that, they were 42. I have another count done on thursday, so i'll let u know what they are once i find out.

It looks like rituxi has most likely failed for me so the doc has given me an option of joining a clinical trial for a new version of IvIg that they are trying on chronic ITP patients. I have never had an IvIg shot before and have read about the various timelines that the platelets have lasted upto on this thread but would like to know the side effects of using IvIg.

Madridista,
The main thing that sticks in my mind when taking IVIG is to drink a lot of water (need to drink about 16 8oz cups of water). This will bring down any side effects. I measured out the water in a large container and sipped on it all day. This will reduce the side effects. If you research IVIG, it will tell you to drink a lot of water. I didn't have any major side effects of taking IVIG--but I did drink the water.

I had my count done on Monday and sadly they had gone by back down to 18

I'm sitting in hospital right now getting IVIG, my third round of treatments since last April. Each tine, my counts stay safe above 30K for about two months after and fortunately seem to be able to go another 2-3 months hanging around in the 20s till they get in teens or bruising gets too bad. This past time I was able to go 5 1/2 months. From what I've heard this is a fairly good response, so am grateful. Good Luck.

5 months since Octagam infusion. Platelets down to 30.
All good, except the heat wave we are currently experiencing!
mj

at least you have something to occupy your time with on a otherwise dull sunday afternoon.... Hope it goes well for you this time. I haven't had any IVIG this time so far.... they have bahaved on just steroids. one will see when I stop taking them in a week or two time...