IVIG Question

Just a quick question about ivig.....

It's been a month since Devyn's second ivig treatment and he is due back to get a bloodtest this week, i would say that this round of ivig only lasted about 2 weeks. After receiving it he broke out in hives and the next day he threw up (only once)

I'm worried that if he is below 20,000 again then they will want to do another treatment, the first time he received ivig he had no reactions adn when i asked about premedicating him for this second round his hemo said it wasn't needed because he had no reaction to it the first time. If by chance he needed another treatment would they use ivig again even though he did have reactions to it? And will premedicating him help with the possible reactions?

thanks
Deanna

I would definitely ask them to pre-medicate if they do IVIG. It should help with some of the symptoms afterwards. I was already registered on this site and had read enough about pre-medicating that I asked them after they started her first IVIG if they had given her Tylenol and Benedryl. They said no, but they were more than happy to give her some and I was glad I did it. She still had the headache and the vomiting despite this, but it could have been worse. Her headache was worse after her second IVIG that they wanted her to get a CT scan. IVIG didn't raise her count so they had to make sure it was a normal headache.

I hope Devyn's counts aren't too low when you go in this week.

Hi Deanna

I know nothing about IVIG, so I can't help you there. Just wanted to say that I hope Devyn's count doesn't require treatment, especially as those side effects don't seem a good swop for only 2 weeks of good counts. Let us know how it goes.

Ali

Deanna,
Brady had IVIG many times earlier in his ITP saga and it worked really well for him. He always had a reaction to it but continued to receive it, but he never had hives or anything - that type of a reaction may be considered more serious. Brady would get a severe headache between 12 and 24 hours after the infusion. I'm talking the worst headaches of his life, where he could barely stand it. He would throw up a couple of times. Then, he would be wiped out for several days. But he would get approx. 12 weeks of no treatments out of it and after one treatment, his count stayed above 20k for a year. We finally decided that IVIG wasn't worth it though. Brady would have a 2-day hospital stay, so that they could infuse very slowly. That, coupled with the 3 days of recovery, and he was missing a week of his life. It was just too hard on him so we stopped. We always had him pretreated with Tylenol and Benadryl, and then he would receive both of those throughout the infusion (every 4-6 hours). He also received Solumedrol (a steroid) and would get lots of saline after the infusion. Towards the end, the reactions weren't as bad - maybe the hospital found the right combination - but it was never an easy treatment for him.

One other thing you may want to ask the hematologist about: I remember someone posting about the differences in brands of IVIG and how you can react to one and tolerate another. In the old forum, I remember a chart, listing the various brands, etc., but I can't find it now. I remember talking to Brady's hemo about it and we did switch brands, so that also probably helped. I think the brand we switched to was Gamunex and it was better for Brady.

I hope Devyn's count is higher this week! You definitely should insist on pretreating if they do IVIG again - it definitely helps.

Beth - mom to Brady (age 13, diagnosed 1/18/02)

Danica did quite well with the IVIg, but did have headaches every time with it. She then started to get asthma attacks when it was done. Because of that they changed the brand - she now takes Privigen and has had NO side effects. I used to give her tylenol before we would start, but now, she takes nothing, and complains of nothing. Maybe, if you need ivig again, tell them about the side effects, and see if a different brand will change anything.

Thanks for all the advice ladies....i can't even explain how helpful your posts have been.

We took Devyn for a cbc yesterday and his count was 76,000.....i really thought it would be lower so i was happy to see that I was wrong. We go back for another cbc next week because they want to see if he is continuing to go down after treatment.

Deanna

Hi Deanna

That is so much better than you were expecting isn't it - good news! I hope next weeks is there or thereabouts so that he doesn't need treating again.

Dougie seems to be on a bit of a down at the moment, which is disappointing because it has only been 3 weeks since his last bounce. We haven't been for a count as he has an appointment next week, but he has petechiae and he came home from youth club last night covered in scratches where he had bled under the skin but the skin wasn't actually broken. They play footie rough at youth club!!!!! These sort of scratches never seems to be a good sign for his platelets, so I am not expecting great things next week - although I guess it is possible he will have bounced again by then!

I will compare notes with you next week - lets hope they are both at least 30+

Best of luck, Ali