Share info about your IVIG infusions here

    • Anonymous
      July 10, 2008 at 3:06 pm

      Since everyone is so different with their pre-meds, dosing & IVIG duration, etc I thought it would be a good idea to have a thread about it. That way we can all see what others are getting & compare notes.

      Emily is 53 lbs & pre-meds with 200 mg’s Motrin & 1 chewable Children’s Benadryl.

      She gets 20 grams of IVIG every 3 weeks.

      Her infusion lasts around 2 hours & 45 minutes.

      Each infusion is given in 5 “doses”. Meaning each “dose” is when it is ramped up. She has a bag volume of 200 ml.

      She uses a Curlin 4000CMS pump.

      Here are her flow rates:

      Dose 1
      Amount: 4 ml
      Rate: 8 ml/hour
      Time: 30 minutes

      Dose 2
      Amount: 5 ml
      Rate: 20 ml/hour
      Time: 15 minutes

      Dose 3
      Amount: 9 ml
      Rate: 36 ml/hour
      Time: 15 minutes

      Dose 4
      Amount: 13 ml
      Rate: 52 ml/hour
      Time: 15 minutes

      Dose 5
      Amount: 169 ml
      Rate: 112.7 ml/hour
      Time: 1.5 hours

      Her pulse, blood pressure & temp are taken each time a new dose starts (ie; when the pump beeps).

      She usually maintains her vitals as such:

      BP: 90/60
      Temp: 95.9 (under the arm)
      Pulse: 110
      Respirations: 18

      End of dose 1:
      BP: 100/70
      Temp: 95.9 (under the arm)
      Pulse: 104
      Respirations: 16

      End of dose 2:
      BP: 100/70
      Temp:96 (under the arm)
      Pulse: 100
      Respirations: 18

      End of dose 3:
      BP: 100/60
      Temp: 96 (under the arm)
      Pulse: 90
      Respirations: 16

      No vitals are usually taken after that. These numbers are almost always exactly the same for every infusion. Emily is very reliable that way.


    • Anonymous
      July 11, 2008 at 3:24 am

      Good idea for a thread!

      My typical cycle is three days of IVIg every 21 days. The amount is still changing a bit… we’re going from 30g to 45g this weekend to see if I am well enough to tolerate the higher dosage; but last treatment was at 40g and my kidneys were painful. So we’ll see…

      My weight varies from 130-160 depending on the time of the month etc.
      My pre-meds are 2 Benedryl each day + 20mg Prednisone on the last two days of treatment.
      My post-meds are one chewable children’s Zyrtec for about a week afterwards and if I have a headache I’ll take one or two tylenol a day.

      Tomorrow I will be getting 45g in 450mL; we usually start the rate at 50mL/hour for a half hour, then bump it to 100mL/hour for a half hour, and then 200mL/hour for the remaining time. Sometimes we slow it down a little towards the end if we’re watching a good movie. 😉

      My vitals are pretty consistent too:

      Starting (POST-Benedryl, PRE-IVIg)
      BP: 100/70
      Temp: 101.5
      Pulse: 100

      Half-way through:
      BP: 120/80
      Temp: 101.0
      Pulse: 110

      At the end:
      BP: 130/90
      Temp: 100.5 (the IVIg is cold, so brings my temp down, gives me the shivers!)
      Pulse: 125-135

      My blood pressure and pulse don’t usually go up that high except the two days I’m taking prednisone; but they have been higher than usual since getting CIDP. While I’m getting the IVIg is the only time my temp drops below 101 now and we never measure my respirations.

      P.S. I get Gammaguard Liquid and it occured to me that side effects should be listed too in case someone didn’t realize they were associated… as such, here are side effects I’ve experienced, not necessarily every time…

      headache – ranges from mild to meningitis, can’t take pain meds except occasional tylenol, I take the prednisone to prevent it
      bloating – gas and constipation, take gas-x (simethicone) and drink apple juice to compensate
      rash/hives? – not sure what this was but in March I got some really itchy spots on my face and neck, the skin peeled and even now I still have scars and itching
      weight gain – yep, usually about 5lbs each treatment, sometimes it goes away the following week, sometimes not
      sinus congestion – similar to allergies, fluids are yellow (i.e. not clear), sometimes I get nosebleeds too
      kidney pain – off and on the whole cycle depending on how dehydrated I get and how much IVIg I get
      nausea – usually wake up in the middle of the night sick to my stomach the first day of treatment, stay nauseated for about 7 days

      I’ve noted other symptoms during treatment but think they are more related to side effects from benedryl and prednisone, lack of sleep, not eating properly, and dehydration. It’s difficult for me to drink enough during treatment due to the nausea and spasms in my stomach – I can manage about 1 40oz drink per hour which isn’t really enough, for me.

    • Anonymous
      July 11, 2008 at 11:04 am

      This is a great thread Kelly that I can compare with my nurse, but as I am changing rates, frequency, etc. next week, will wait and post those results. Emma