Allergy to IVIg?

    • Anonymous
      March 4, 2008 at 1:12 pm

      I’m trying to decide if I’m having a mild allergic reaction to the IVIg or if this is a typical reaction for some people. Up until the last two months I’ve had no problems with the IVIg other than a mild headache if I don’t drink enough during and after the infusion.

      In my late Jan/early Feb infusion we decided to try it without the Benedryl just to see if I could go without it and be a little less dopey during the day. I had no immediate reaction but about 5 hours later I started having trouble breathing, noticed I was getting dizzy, itchy etc. I didn’t put two and two together until the next morning when I was talking with a friend and she suggested trying the Benedryl. I took one then and the symptoms abated.

      My most recent infusion was last week and I continued to take Benedryl, but after the first session noticed I was wheezing again so I started taking Benedryl every 6 hours. By the third infusion not only was my vein burning but I was once again feeling wheezy, itchy, dizzy etc. So I took a 24 hour Zyrtec and that helped the symptoms some but even with the Zyrtec I’m still coughing and dizzy.

      Whatever this is it seems to be getting worse. I’ve sent an email to my Dr. but I’m curious if anyone has had a similar reaction and what the cause/cure was. I’m REALLY hoping this isn’t a big deal, I don’t want to give up my IVIgo-go-go juice… 🙁

      Thanks!

      Julie

    • Anonymous
      March 4, 2008 at 1:25 pm

      Julie-

      I had a reaction to an individual dose of IVIG. I had breathing difficulty shortly after they started running the iv. Then I began coughing really bad. Immediately after stopping the ivig my reaction stopped. The next day my neurologist said that it was definately a reaction to that particular ivig because of the makeup of the brand. There must have been something in there that my body was reacting to.

      After every infusion I always had a reaction 48 hours later. I would have a severe headache, run a high fever, and throw up for 24 hours. They never felt this was an allergic reaction, just a chemo-type reaction.

      Hope this helps!

    • Anonymous
      March 4, 2008 at 2:14 pm

      Julie, sorry you are having problems with your gogo juice. Can you try a different brand for the next session? if you can and don’t have a bad reaction than you know it is the brand to avoid. Keep up the search Hun! Take Care.

    • Dawn Kevies mom
      March 4, 2008 at 2:50 pm

      Julie, I was just thinking about you today and your fever situation you used to have, do you still have that? I found some info if you still do get them. Regarding the ivig, It is my understanding that when initially tested they can tell by your iGgIGa (or however those letters go) levels if you would have an anaphalactic reaction. We were told reactions are not the same as an allergic reaction. Maybe the last 2 ivig’s were from the same donor pool? The donors are the only difference, the detergents stay the same, so maybe next time will be better.

      Try Gammunex, some say there are less reactions with it. Apparently it is sometimes difficult to get and you have to switch from brand to brand… not a good idea. But….. you can sign up with Gammunex direct to get on a list that guarantees you to always get it, gamma guard has a similar program, gamma assist.
      Kevin’s reactions have been different recently as well, he had that swollen lip thing followed by hives over his body, he now gets the headaches/nausea 2 days post ivig. Everything is so unpredictably messed up!!!
      Dawn

    • Anonymous
      March 5, 2008 at 5:40 am

      I think you all are right about the different batch – it’s the same brand GammaGard – but this last session came out of the new batch they just sent so it makes sense that was the problem. Whew! I’m not having trouble anymore other than a little nausea but I have to say the IVIg isn’t helping my cranial nerves AT ALL – my eyes and ears are still pretty messed up, getting worse actually.

      On the other hand I can see a real difference in the steadiness of my legs, I can walk better now and cruise around the house without even a cane now. I do still bump into things but this is as much because of my vision as my unsteadiness.

      Yep – I still have my constantly elevated temperature. It usually stays around 101.5 but sometimes a little lower or higher depending on the time of day or what I’m doing. Since they haven’t found a source of infectious disease or cancer I’m assuming the constant fever is due to the constant inflammation. Sometimes it’s hard to believe I’ve had a fever for 20 months steady now, I’m starting to wonder if my body will ever adjust back to normal.

      Other than that life is still pretty amusing, we’ve managed to have three more animals adopt us in the last few months. It certainly wasn’t our intention to start feeding another cat, much less have him invite his pals the raccoon and skunk but there you have it. They all wait for me every morning to be fed. Actually I don’t officially feed the raccoon and skunk but if I don’t toss them something in the morning they will come run off the cats and eat their food. And they might be cute but they are wild animals and they stink and I’d rather them eat 50 feet away from my house. Yesterday I do think they were thanking me for the stale blueberry muffins – they sure gobbled them down fast and made a lot of squeaky noises before shuffling off. 🙂

      Thanks for your responses ya’ll, I appreciate the quick feedback and it’s nice to know you all are out there!

      Julie

      P.S. I typed this whole post with my eyes closed and only made four typos – thank goodness my fingers remember where to go!