IVIG Question

My Princess had her first IVIG after being dx with ITP and it worked great. Her counts were up to 230,000 within 1 week.

She had her counts down three weeks later and they were down again (as expected) to 12,000. We did a repeat IVIG the next day. I pre-medicated her through the next few days to avoid the nasty side effects she had the first time around.

Anyway, my question is...Do any of you have a good response to IVIG one time and then the next not see the same results?

I am not sure it boosted her the same this time. Her doctor didn't schedule us for a re-check until 3 weeks after treatment since it worked so well the first time. Her bruises have not really gone away and she has a TON more, only 2 weeks out from treatment.

It seemed to last about 2 1/2 weeks the first time. This time, I am not sure it worked much at all. Anyone with this experience?

I usually do well on steroids for first 24hours or so then they gave me IVIG and platelets would stay up for 18-24 months etc and had a few 4 year gaps. I don't know if had side affects as dont know if my side affects were apart of the very low platelet count
but received the IVIG as an inpatient over night. 5 bottles each night for 5 nights.

I had about a 4 year gap until last August where they did watched and waited, then platelets dropped to usual 7 but they only gave me the prednisolone (largely due to me wanting to make a new year holiday had booked and got there by catching the train staight from hospital:P )

The platelets came down again to 4 the other sunday and given prednisolone again and sent home next day which in effect is far better. Last blood test they are up to 236.

But am wondering when the next drop will be this year though prednisolone is holding them up as such but come back down faster if looking at the past.... I wonder how many times he will rely on just prednisolone before he gives in and go back to what happend before. I a new consultant as the previous one retired. There are other things they can try and he might do that. By the way I already have had my spleen removed much to his renewed interest when I told him and showed him a breakdown of my ITP history. He can't suggest splenectomy to me;)

But yes, on the whole I had a good response from IVIG and only mild side effects of IVIG though as i say I do not know if that was more to do with platelets being so low or the side effects of the ivig? I didn't get any of the headaches etc or fever. they stop that bottle instantly get a temp because one year - temp was only up half a point and that particular bottle was stopped.

Glad it going okay for your daughter.

IVIG considered a rescue treatment, which means that it will quickly get counts up, but often doesn't last long. It's only really expected to last about a month, and for some people it lasts much shorter. Everyone is different in how they respond to the treatments and sometimes it changes for the same person. I think that if you're worried you should be able to at least get a CBC on your doctor. That way you'd know exactly where her counts are. That being said, sometimes it's hard to tell where your counts are based upon signs like bruises. Sometimes people's counts are good and they still have bruises. The only way to know is to get a count.

I hope this is the case for you're daughter,

Lily

Thank you, Lily.

The treatment worked well the first time. We just assumed it would work the second time, so the doc did not schedule a count check for 3 weeks after treatment. And I called to get her checked again this week (2 weeks post-treatment) and they on call doc would not check her counts this week. They told me there was no point in checking. (her doc is in India right now)

So, we were told to wait until her scheduled appt next week.

I know the IVIG is only temporary, I had just hoped the 2nd treatment would work as well as the first. She is a super active 2 year old and makes me nervous constantly.

We go back on Tuesday. I will update with her counts then.


We are only about 6 weeks into this ITP journey, and I am going crazy. I don't know how some of you do this for months/years.

It may be considered a rescue treatment but over the years it lasted far better for me than just steroids alone so it seems. as i said in the above post. and as people say, everyone is different.

nothing wrong in a good few bottles of ivig if it works and hope it does.

My son has only had one treatment of IVIG (2-3 rounds); his count was at 4K and when he was discharged from the hospital, his count was 52K. Within a week or two, his count had dropped to 27K, and eventually dropped to 13K before they went back up on their own to a safe level.