IVIg and side effects question

I was just wondering if anyone has noticed a correlation between whether someone has side effects from IVIg and whether someone has a response from IVIg. I had heard about all the horrible side effects people have from IVIg and was happy that I had almost no side effects at all, other than a slight headache during and after the infusion that went away by the next day. I was pretreated with tylenol and benadryl and have already been on 80mg of prednisone for the past month.

The fact that I haven't felt sick at all makes me wonder whether the IVIg is working or not. I am just nervous that I'll be one of the people IVIg doesn't work for. I guess all I can do at this point is cross my fingers!

So - have any of you noticed a correlation between side effects and getting a response from IVIg? I know that I am probably just obsessing too much over this, so feel free to tell me I'm being a little crazy...

I've heard people talk about side effects versus effect for several treatments including WinRho and Rituxan, a nurse once said that when someone shivers uncontrollably from WinRho they would say 'you see, it's working!' - but I've not seen any studies supporting a relationship, and people's anecdotal reports here on the board don't seem to suggest that pattern.

For myself, with WinRho and Rituxan, I have not seen a relationship between side effects and response. I've not tried IVIG.
Erica

Hi Liz,

My daughter was one of those who had horrible side effects with the IVIG-intense headache, violent vomiting, extreme fatigue, aches and pains, burning in her veins, all lasting for 2-3 days afterwards. Her very last IVIG, a new nurse refused to pretreat her, and she nearly died from anaphylactic shock, was unconscious for over an hour, her blood pressure having bottomed out. She described it as being the most physically painful thing she has ever experienced. (which is probably true, given as she was only 12!)

Yet, despite all those side effects, she never had much more than a small blip in her counts a couple of days after. By the following week, she was always <10 once again.
So, for her, a lot of useless suffering for no benefit. So, maybe I'm biased, and tend to be more sensitive to hearing similar stories from other parents. It seems to me that, it's quite the opposite to what you're thinking--the more bad reactions there are, the less effective the IVIG seems to be. And, those with little reaction, seem to respond better. That's my take on it, anyway. You'll have to see what others say, though.

April

I was actually going to say the same as April. My son had horrible side effects from IVIG and had zero response to it. If you wanted to make a correlation, you might be able to say if you have no side effects it might be more effective, but that's pretty anecdotal. But that was our experience.

patti

Thanks for your responses. I am so sorry to those of you who have had to watch loved ones deal with horrible side effects and got no response anyway. That must be awful!

I know there is nothing to do but keep hoping for a good response and wait! I am impatient though - I am 38 weeks 3 days pregnant and we were trying to get my count up before I deliver, so I'm running out of time! The prednisone had seemed to be working until my counts started going down again last week. We'll see though. As long as baby and I are healthy one way or another, that is what matters!

Liz:

I wouldn't think that one has anything to do with the other. Side effects are side effects whether a person responds or not. Some people get hit harder than others, but that has a lot to do with bad luck, allergic reactions, pre-treatments and infusion rates.

Liz,
I've wondered the same thing but don't remember seeing much about it discussed on these boards. Just thought I'd tell you my son's experience. He had IVIG numerous times - we finally stopped using it because the infusion took so long and his reaction was so terrible (excruciating headaches, vomiting, exhaustion) but it always worked incredibly well in terms of platelets - he would go above 300k and it would last a while. Now he uses WinRho as needed and has some side effects, but nothing as severe as IVIG. He'll get mild chills and a mild headache and it also works incredibly well - sends him over 300k usually and also lasts a good long while. Seems like (as Sandi said) side effects probably have no correlation to response.

Best of luck with your last weeks of pregnancy. We look forward to hearing about the wonderful new addition to your family soon!

Beth

I have been getting IVIg for about 7 years now. Frequency has varied anywhere from every 2 weeks to every 8 weeks (which it is now). I have very minor side effects...usually a headache for about 24 hours after treatment and tired just from sitting for so long. But it works....it doesn't keep my counts up for good but it keeps me out of trouble and bad symptoms away!

Well, I got my count from yesterday and my platelets are up to 195! I am thrilled. I have not had a count anywhere near here in years, since I was diagnosed.

The OB wanted to induce either Thursday or Sunday (I'll be 39 weeks Friday) but my hema thought Thursday was a better idea in case the IVIg doesn't last more than a few days and my count drops again. So it looks like I'll be getting induced tomorrow!

My best to you and the baby Liz!

Liz, let us know how you and the baby are when you feel up to it.

Whoa - happy baby day! I'm glad the counts are up for the occasion! Good luck, Liz!