Question on ivig

Hey guys has anyone been on ivig long term once a week for a year? I'm 6 weeks pregnant was on nplate but had to get off because of the risks now on ivig which has always been my emergency go to I'm just hoping it will stay potent with long term use my counts only last a week and usually go to about 300 peak then back down to 3-20 by the next week. Ivig and nplate are the only meds that work on me

I wish I could answer your question. However, I want to say congratulations! I know how much you wanted to have a baby! Keep us posted on everything!

There used to be a wonderful older woman who came here - bonbonw, Yvonne - the only treatment that worked for her was IVIg. She knew the brand that worked for her.

Congratulations - may your pregnancy be easy & uneventful!

Thank you

Congratulations on your pregnancy kelirae!

I had Ivig over a period of 5 months last year when I was first diagnosed. One brand (I think it was something like kivig) worked better than other brands for me personally. The first Ivig got me up to a count of 22 and lasted a week. The next got me to 55 and lasted two weeks. I responded better to Ivig every time I had it. After that I started to have Ivig every 3 weeks BUT I STARTED TO JUST HAVE A QUARTER DOSE after my counts started to reach normal levels after a dose (my highest count from Ivig was 207). So 3 bottles instead of the full 12 bottles in my case. My platelet count only rose to mid 70's but fell more slowly. My haemo thought that perhaps very high numbers of platelets was triggering my immune system to attack faster.

I sincerely hope that either you start to respond better to Ivig (perhaps once the nplate is truly out of your system?) or that it sees you through your pregnancy on a weekly basis. I'm trying to conceive after much discussion with one of my haemo's - he is adamant that low counts should not affect pregnancy at all - but clearly does affect giving birth. We have agreed that if I am lucky enough to conceive we wouldn't treat counts unless below 20 in pregnancy to save treatments for closer to birth - this might be worth considering if you do start to respond better to the Ivig.

Sending lots of good luck your way - keep us posted

I am on ivig once a week and rarely lasts a week I was down to 4 today when I went into the drs. Last weeks after a week I was at 20 n was super happy about that but to be fair I do have a cold so I'll blame that this week lol usually my count can go all the way in the 300s but crash sooo fast. It's funny you mention brands because in a hospital I was in ivig didn't work ended up in another hospital worked like a charm that is a great point! Didn't know about different brands. And good luck on getting pregnant it was a complete surprise but I'm so excited !