IVIG….What about Higher doses over Less time?

    • Anonymous
      April 30, 2007 at 7:54 pm

      I am a new member and am already enjoying all of the posts. I’m getting ready for my second hospitalization and IVIG. When I called to ask the nurse if I could excpect another five days of IVIG she said she thought she had heard the dr. say that he planned on giving me the whole five day amount in just one or two days if I could tolerate it.

      Has anyone done this, and if so, what was your experience? I remember last time I had pretty bad headaches and some nausea……I don’t know if I’m brave enough for this one or two day experience!


    • Anonymous
      April 30, 2007 at 8:25 pm

      Sheila I never had IVIG but what others has posted was that take benedryl before your infusion and not have the infusion rate to be to high I think some people the highest is 150ml an hour. Search old post might help you and other people will post there experiences with IVIG.
      I wish I could help you more. If I find any information I will post it for you.

      Welcome to these boards


    • Anonymous
      April 30, 2007 at 8:27 pm

      Sheila read this post


      Copy and paste the url were they talk about the infusion rate


    • Anonymous
      April 30, 2007 at 8:56 pm

      Sue is right about taking Benydryl. I also take two Tylenol. Don’t have problem with headache. Infusion rate is usually based on your weight with heavy person being infused at a higher rate. Also a 10% concentate of IVIG can be infused at a higher rate than a 5% concentrate. I have been infused at 185ml max for 5% and 325ml max for 10%. I also weigh approximately 200 lbs which these rates are based on. My nurse has me weigh in every time I come in for an infusion and then has a formula to calculate the rate of infusion.


    • Anonymous
      April 30, 2007 at 10:44 pm

      [B]When Frank first had IVIG it was given in a 5 day period, after that they would do a 5 day infusion within 3 days. He never had a problem with it.

      Good Luck with it.:) [/B]

    • Anonymous
      May 1, 2007 at 12:28 am

      Most doctors will start a person off very slowly when starting IVIG. Some people don’t react well at all to it. Starting slowly is a way to see how well you do on it. Common reactions are headaches, diarhea, nausea, tiredness, rashes and lots of other things. I have experienced all these and more, but couldn’t do without it.

      The Tylenol and Benedryl are to help keep those reactions to a minimum. I, too, have had lots of combinations of them and now take 3 Benedryl and no Tylenol. I really DO need a long nap afterwards [it’s a lot of Benedryl all at once], but I don’t have any headache. Be sure to call your neuro office and leave a message about your having headaches the last time. You should also mention this problem to the hospital nurses, probably then you will get either and/or both Benedryl and/or Tylenol.

      Do pay attention to the different rates that the IVIG is pumped into you. Bring a small note pad to take notes…even if you don’t really know what it’s all about…the nurses should also be making notes. IF someome speeds up the rates too fast for YOU, you will probably get a very noticable headache for sure. If you suddenly find that the infusion is going into you too fast and after an hour you start to get that killer headache…absolutely DO bring it to the nurses attention. The tolerate it part is whether and how badly you have any of those reactions. Don’t be scared tho, they DO go away.

      I first had started my ‘doses’ at five days, then three days the second time, then four days the third. Now I receive my dose over two days at home. I like that it’s at home as I just continue napping and don’t have to worry about driving. Hospital infusions, other than the neat folks you meet there getting infused for all different kinds of things, is plain old boring. I’ve been having infusions for 2-1/2 years and I’m still here.

      Here’s hoping that it really works for you.

    • Anonymous
      May 1, 2007 at 2:00 am

      Thank you to everyone for your advice. I will definately make notes of the infusion rate, and will speak up if the headache gets too bad. Thanks, Sue, for the article; I’m going to read it right now. I’ll post after I get home from the hospital if there is something interesting to add.


    • Anonymous
      May 1, 2007 at 3:20 am

      I had mine over three days 2 weeks ago mainly because I asked if it could be done over a shorter time. My advice would be to watch the infusion rate. I get a headache if they go over 180ml/hr otherwise I am fine. Managed to hand stitch a few blocks for a quilt = got to have something to show for that down time:D

    • May 1, 2007 at 7:21 am

      It’s almost a given that I get the headache,etc. with the infusion. I take 4mg of Dexamethasone {a steriod} along with the benedryl and tylenol each morning before the infusion and the steriod for a day or so after. It cuts back on the side effects greatly. They also run my drip about 180.

    • May 1, 2007 at 11:00 am

      Hi, my son weighs 104 lbs and he gets 95 g of ivig over a three day period for about 7 1/2 hours a day. The ivig is scheduled for six weeks apart for a total of six doses (we have four more to go) and then we a re going to re-evaluate to see how long we can spread it out for. We pre medicate about one hour prior to ivig with benadryl, zofran (upset stomach) and tylenol. About three hours into the infusion I also give him ibuprofen. Regarding the flow rate, when we were in the hospital, they starte at 12 for the first 1/2 hour, 28 for one hour and fifty for the next hour and then they went to 115. About 20 minutes into the ii5 rate, his blood pressure elevated to 140/99 high for a child and he had a ferver, intense headache and started vommiting out of control (for the next 12 hours). His body was shaking fiercely. They stopped the ivig, let him rest for two hours and started the process over, but this time did not pass the 50 flo rate. Now we never go past 50. As I have learned on this forum, drink plenty of liquids!!! If you ever start home infusions, please read my other posts and make sure the nurse stays the entire time! Dawn Kevie’s mom 😮

    • May 1, 2007 at 11:05 am

      Hi, me again, when Kevin’s ivig ended Sunday, he was fine. At 11pm, 6 hours post ivig, he had a reaction, the headaches, vomiting, fever. Another mom on this website told me to medicate for the next 24 hours post ivig, so I will do this next time! See how much we learn from others on this web site! I am so glad I have some where to go! I hope you get answers you are looking for too!! Dawn

    • Anonymous
      May 2, 2007 at 10:50 am

      Hi Sheila – the pharmacist at my infusion place told me that side effects are almost always because of the rate of infusion. I tolerate IVIG pretty well, so I start out at the lowest rate and get “bumped up” every 15 minutes to maximum. I still get headaches, some nausea, and diarrhea – depending on the brand of IVIG. But considering the IVIG allows me to be “normal” for about 2 1/2+ weeks per month – I’ll happily live with the side effects! I take 650 mg Tylenol pre-med, but no Benadryl because I drive myself and it makes me too loopy. I have started taking another 650 mg Tylenol when I get home and IMMEDIATELY plop myself on the couch for the rest of the day. It takes between 2-5 days to really recover from infusions for me – so I get a lot of rest and don’t push myself (learned the hard way!). Right now, I am doing the 3 day thing, for a total of 30 grams per day. See neuro today, hope it’s good news, or at least not bad news! Good luck and good health!

    • Anonymous
      May 5, 2007 at 9:10 pm

      The higher the dose and the higher the rate, run a higher risk of the potential side effects, including stroke and heart attack.:eek:

    • Anonymous
      May 8, 2007 at 1:28 am

      Hello everyone, and thanks again for all your advice and experiences…it’s just good to know that I’m not alone. I ended up getting the IVIG over five days which was probably the best way to go….this time I had alot of nausea; that didn’t happen last time…it definately wasn’t fun. Finally, on the last day they gave me phenergin…it took care of the nausea and also knocked me out! I slept all day and then all night. I also experienced the headaches again. I’m glad it’s all over with.

      Again, thanks for your posts.

      Sheila F.

    • Anonymous
      May 8, 2007 at 8:24 pm

      lightly the day before, but, are well hydrated. For me, about 1-2 hours into an infusion I then get terribly hungry….What I did while being infused at the hospital was bring a sandwich or snack [banana, pudding cup, and very tame 1/2 sandwich] to eat before I fell totally asleep from the pre-meds…I’d wake up about another hour into infusing with the ‘runs’ but it was never critical. Unless the bathrooms were all occupied…running around looking for a ‘place’ with the line in your arm and the pump in tow is NOT a game at all. Then I would go home and quite sleep it off for the rest of the day. Once it all was over, I was just fine-unless the rates went in too fast, then there would be headaches. Again usually not lasting more than one day.. Should they be longer call your doc’s office and just ask if this is normal…Asking and getting answers are your best protections. I now have infusions at home and am far more comfortable…I can eat what I want when I want to, and a really good nurse watching over me. I hope you become as lucky as I have been.

      BTW I did have one bad reaction at the hospital once…half that last day’s dose was dumped. I cried at that lost precious IG being lost, and had a headache for almost a whole week. I complained to all. I believe the hospital changed their procedures and trained the nurses with updated or refresher info…Somehow after that, my ‘mild reaction’ had changed to a ‘serious reaction’ and the infusion nurses would tell me [off-hand] that ‘We had to admit one two or more in the last month, because of reactions’…They’d only admitted two in the year prior to my ‘event’. At least at home, if I get ‘miserable’ I’m comfortable being so.

      What we do go through to feel better! It IS amazing isn’t it?

    • Anonymous
      May 11, 2007 at 5:19 pm

      I started out having only mild reactions a little headache, fever, rash. But on my second year of IVIG I started becoming very sick afterwards. Now I take it in 3 days at 120mg. rate, the pediatric rate! I’m not sick anymore so who cares! I would do it even if it did make me sick. It helps that much.
      I have a tendency toward low iron, so phenergin doesn’t work for me, I get terrible reaction to it when my iron is low.
      Be blessed, you are not alone.:p