IVIg dosage and timing
AnonymousOctober 1, 2007 at 12:42 pm
Well it looks like the IVIg will be scheduled for tomorrow but I wanted to ask… I am getting 50mg and she is planning to do it in 3 hours. Last time it took 8 hours to infuse but I don’t know what the dosage was. Does that seem OK? She was really not happy when I told her it took 8 hours last time because she says she has a child in school and doesn’t want to pull him out for the entire day. (feeling grumpy and tired I’m thinking to myself – SO? THIS IS MY PROBLEM?) Anyway, I guess I will have to hope for the best but they are also not giving me the extra saline this time around – my kidneys are not in bad shape but the last time I had IVIg without the saline they hurt. I’ve waiting so long for this I hate to be nervous nelly now but what can I say? I’m nervous about her only wanting to take 3 hours… 😮
AnonymousOctober 1, 2007 at 2:07 pm
What are your dr’s orders? Your nurse needs to follow whatever is ordered – however many hours it takes!
I get 45 grams over 6.5 to 7.5 hours, which includes saline…I need the saline to keep from having a bad reaction!
I already don’t like this nurse’s reaction…you should immediately contact your dr about this nurse. You deserve a wonderful, caring nurse! Hope you can find one!!!;)
AnonymousOctober 1, 2007 at 4:05 pm
Well I haven’t heard anything from anyone about who is coming for how long tomorrow but I’ve decided that 3 hours is just too scary for me. My husband will be here tomorrow because he is worried as well so we’ll just take it from there. I told “Ms. I’ve got to pick up my kid” that if she can’t plan on 7 hours then they should find someone else. Since I haven’t heard back from them I don’t know whether they succeeded or I’m getting “Ms. I’ve got other priorities”. It doesn’t help that I don’t live near anything convenient though I still don’t regret moving out to the country… if I’m going to be stuck at home I’d just as soon look out my window at the deer, birds and squirrels. I saw a bald eagle a couple of weeks ago. 😀
Sadly I was too out of it Friday afternoon to ask what the prescription said but they did tell me 50 grams or milligrams (?) and that the doctor ordered it every 6 weeks something he hadn’t discussed with me yet…
AnonymousOctober 1, 2007 at 4:44 pm
Hey there…something is wrong!!!! I take 50 grams as well, and am infused at
166 ml. per hour. That takes a little over 6 hours to finish. Yes, they mix it
with saline because it helps to be accepted by your veins…in actuality, the
IVIG is caustic to your veins…I’ve never heard of not having the saline with
I had problems with my current nursing company that provides the nurse…one
time, a nurse called, sounding sleepy, or on something…she never showed up
at all…then, 2 hours later said she left messages on my phone…she never
called. I called the nursing company back, they sent another one at 6:00
pm, so it took a little after midnight, waiting for her to come back and take
out the huber needle and flush my veins. I called my insurance company
and filed a greivance against them.
If you can, call your doctor’s office and talk to a nurse, assistant or office
manager, to ask them if they can read the script to you, over the phone, to
find out the drip rate. Usually 50 grams is in a 1000cc. IV bag and you
divide it by the number of drips per hour, it will give you the number of hours
it will take to finish the bag.
I was in the hospital in May and was given 250 ml of methylprednisolone
within 20 minutes, on an infusion, which was 333 drips per hour. I said no
to that rate, it was lowered to 200 drips. A nurse once told me, in the days
of war, they someimes administered the infusions by squeezing the bags
full-force to get drugs into the patient quickly.
The key here, is to find out what your doctor wrote on the script for the
infusion rate – or ask for a nurse that won’t be rushed for time. The IV bag
or if you use the type that you have to mix, the powdered crystals, will
have, by law, the infusion rate printed on a label – that is how the nurse
should follow it. Of course, the first time I had home health, the rate was
for 90 drips per hour…I told the nurse, WTH, I’ll be here all day and night.
So, after 10 minutes we jacked it up to 150…that was better.
All in all, I’m glad you got the IVIG…that is bottom line. 🙂
AnonymousOctober 1, 2007 at 8:58 pm
I don’t know if you are getting your IVIG and ‘accessories’ delivered before-hand but if so, The instructions should be ‘in the box’ and on the bag. Most of the time, at the very first few times, infusions are started very SLOOOOWWWLLLY, to prevent side effects [some of them far from pleasant] and then gradually speed things up. After all, you are getting lots of stuff pumped into you which is not the kind of thing your body can expel quickly.
For me, I’ve found that that ‘strain on the kidneys’ in the hospital setting was due to being set up on saline line for 2-3 hours then on a saline based IG solution for another 3-4 hours! At home, I’m finding that I can tolerate a sucrose based IG solution far easier, and faster, with far fewer side effects…BUT keep in mind that each of us is different in this respect. Until you know and trust your IV nurse and that she’s not going to rush things to fit HER schedule, then you mite want to ‘try’ maybe with your docs blessings, a faster rate. BTW I have and use a portable pump, which measures everything so steadily and quietly, that I really nap during most of the process – which is now down to less than 3 hours for a similar dose [in Grams].
Talking to my IV nurse, I’ve found that her company won’t allow the ‘rate’ to go over 180. In the hospital, they upped the infusion rate so slowly that in the last 30-40 minutes I was getting 226-250, too much-too fast. So now I get more in, in less time? Go figure, but again how each of us tolerates it is always going to be different. Just read about infusion rates as much as you can, and DO NOT EVER let a nurse rush you! IF you feel they are, and aren’t checking your vitals during infusion, speak up VERY CLEARLY about your concerns and make them known to both your doc and the service….You cannot cut corners with this kind of stuff!
I hope you feel better after it all! Truly!
AnonymousOctober 1, 2007 at 9:39 pm
If you are really only getting 50 mg (0.05 g), then it should take only ten minutes :p . Since I am sure you are getting 50 g, I think 3 hours is too fast. Because you have no experience with a faster rate, you and your nurse should plan on what the last one took.
A typical mix ratio is 6%, that is, 6 grams of IgG in 100 g saline solution. It can vary, from 3% to 12%, depending on past history, doctor’s preference, and ease of dissolution, but let’s use 6%. If you are going to get 50 g, you are going to get about 850 ml worth of solution. At my hospital, we start at 50 ml/hr for the first half hour, 100 ml/hr for the next half hour, 150 ml/hr for the next half hour, and so on up to a maximum of 300 ml/hr. However, I know of nobody who gets the IVIg at 300 ml/hr, as the headache usually become severe. I personally top out at about 150 ml/hr. If that is your maximum, you should plan on about 6 hours for the infusion.
I would be very careful about a nurse who has decided upfront what the infusion rate will be. While you cannot actually operate the pump (rules, not reality), your nurse should do as you tell her when it comes to the maximum rate. Try to go for higher rates (who wants to be hooked up to an IV?), but at the slightest hint of a problem, drop back to a bit below the previous rate. That should let you get done as quickly as possible, with minimal side effects. Still, be prepared for a killer headache. If you do get one, next time, keep your infusion rates much lower and see if you get a killer headache. If you don’t, then you know the boundaries for your rate, and you can experiment within them to find the optimal rate.
Godspeed, and I hope your nurse works out OK after all.
AnonymousOctober 1, 2007 at 10:53 pm
I support MarkEns and all the other comments. Each form of IV IgG has a maximum rate and it depends in part on the concentration. All should start slow and increase in steps. My neurologist used the same type step schedule as MarkEns’ did. If you go too fast, there is a greater risk of allergic reaction and of kidney damage. It is also worth noting that people with GBS or CIDP seem to tolerate rates of IV IgG much less rapid than people with many other conditions (such as low levels of immunoglobulin). So it is not wise for someone to argue that other patients tolerate faster rates. You tolerate what you tolerate. When I got IV IgG, I could only take a rate of 150 ml/hour maximum for 6% solution. When they tried to go faster, I felt like a horse sat down on my chest. It also helped to take benadryl by mouth the second time.
I hope the infusion goes well tomorrow.
With hope for cure of these diseases.
AnonymousOctober 2, 2007 at 4:15 am
Thank you so much for responding everyone. My anxiety level has gone down dramatically. MarkEns, that is the schedule I remember from the hospital as well, thank you for reminding me, I couldn’t remember. I don’t remember a lot of my time in the hospital but I do remember we went from 25ml->50ml->75ml->100ml->150ml with vitals every half hour until we got to 150ml/hour then every hour. Apparently the nurse called after I went to sleep last night and my husband had a “chat” with her – !!! – he woke me up and told me not to worry that it would be OK. The IVIg will be delivered this morning and we’ll take a look at the dosage but will write up our own schedule of how I want it slowly increased. If the nurse can’t or won’t go slowly as requested then we will just stop it until we get someone not in a hurry. I feel much better that my husband will be here. I don’t think all that well when I am tired and feeling sick then once you put Benedryl in me you might as well just forget me making any sense – Benedryl has a profound impact on me, I’ll sleep for 8-10 hours. 🙂
I don’t know if not getting the extra saline will have an impact this time around, but while my kidneys usually function pretty well I had a LOT of kidney infections when I was a child so I try to be good to them now. I assume they will be mixing the IVIg with some saline as she told me I’m getting the powdered version but I was really hoping for an extra bag to keep things from getting too thick and reduce the stroke factor as well. So, I’ll just take two baby aspirins today and keep drinking and hope for the best.
Thank you again everyone for responding. If I am not too woozy I’ll post tonight on how it all went. Keep your fingers crossed!
P.S. Apparently it will be “Ms. I’ve got to pick up my kid” but she will be NO MATCH for my “you aren’t going to rush my wife” husband. He can be quite fierce in looking out for me. hee hee
AnonymousOctober 2, 2007 at 2:48 pm
YEAH!!! I’m glad that you have such a great husband looking out for you.
Sometimes, “chats” are all you need. I like the fact that you don’t sit back
and let others tell you how they will infuse you and the rate. They are doing
a job, but you are the patient, you control you.
Good luck with your IV, I hope you feel better…just rest.
Miami Girl 😀
AnonymousOctober 2, 2007 at 3:35 pm
Well it went just fine – the IVIg arrived 5 minutes before the nurse this morning and we started premedicating at 8:30. I got 45g in 450mL and it really did only take 3 hours. We started at 60mL/hour and increased by 30mL every 15 minutes until we got to 200mL/hour. I was absolutely fine through the whole thing although it was interesting to watch my blood pressure and temperature go up and down. I would have slowed it down at the slightest twinge of a headache or uncomfortable feeling but honestly I felt nothing except groggy from the Benedryl. I’m still groggy from the Benedryl and will probably crash very soon but I am SO HAPPY that it worked out and I wanted to thank each of you that responded to my panic post – I really needed a little sanity and once again you all came through for me. Whew! Two more days but I’m not worried about it anymore – I’m sending the hubby back to work tomorrow and going it alone.
Thanks again ya’ll – goodnight!
AnonymousOctober 2, 2007 at 10:52 pm
Take each step as it goes…and YES! I KNOW the Benedryl FOG well! Sounds like your set up could be really good, but for the meds delivery? I know I’ve stayed up till 10pm plus waiting for a delayed delivery the nite before…only to find out that the right ‘infusion tubes’ or butterflies weren’t in ‘the box’…
May tomorrow’s infusion be calm and without ‘events’? Then all future ones…
AnonymousOctober 2, 2007 at 11:50 pm
Julie, Glad things went alright today. Playing my opposite role for a minute-just beware of the second day-it can be a dooozzyy!! I was fine after my first day of ivig, then the second day came and ended the streak, in the last half hour I came down with a high fever, chills, vomitting, nausea, a severe headache and neckache-in other words Aseptic Meningitis. Flip-flop again(angel is back;) ) since you can take benadryl and have a good time while on it, 😀 you will probably have a smooth ride tomorrow. Keep us posted. Take care.
AnonymousOctober 3, 2007 at 10:21 am
So glad it went well! Mine only take about 2-1/2 to 3 hours also, and I get 35 g.
Everyone’s different — the first time, I had 3 days in a row in the hospital and was fine with all three. Did get a bit headachy and light sensitive, but nothing too bad.
AnonymousOctober 3, 2007 at 12:19 pm
Well day two went well also – no problems, other than my vein almost blowing out, but it survived with the help of a heating pad. In fact, I have more energy now than I’ve had in days, though it’s probably just the Benedryl having the opposite effect rather than the IVIg having had time to work. It looks like this is going to work for me ya’ll and I’m really looking forward to seeing if it has an impact on my fatigue and numbness. 😀
AnonymousOctober 5, 2007 at 3:48 pm
Well four veins later the IVIg round is finished with no real side effects. But I did discover something interesting. I was trying to stay hydrated so here is what I did:
On Day One I drank 4L of liquids, the first two were half apple-juice and half water, the second 2L were half gatorade half water. No headache, but I had the runs.
On Day Two I drank 3L of liquids, all half gatorade and half water – no runs. HA HA, HERE IS WHAT I LEARNED!!! The nurse told me that apple juice has a laxative effect – no wonder I had the runs so badly in the hospital – that was ALL I wanted to drink! HA HA HA HA! I’m SO laughing at myself for not suspecting it. Anyway, no headache on Day Two either, but
Day Three I went down to 2L of liquids seeing as I was constantly having to haul that pump to the bathroom I thought I’d see how little extra fluids I could get away with and lo and behold I got a headache. Not a bad one but just enough that all I wanted to do was lie in a dark room with my eyes closed.
So today I’m trying to make up for it and will stick with 3L of 1/2 gatorade 1/2 water in the future. And no apple juice. 😉
AnonymousOctober 5, 2007 at 7:00 pm
I’m glad that you’ve done well with the home infusions. If you are doing a course of IVIG over a few days, sometimes at the very end you will start to have the bad side effects. You can drink more water (which you’ve already noticed) and slow down your infusion.
Emily gets 20 grams. Her infusion takes 2 hours and 45 minutes. That is FAST, I’m told. In the hospital her infusions would take 4-6 hours.
Make sure you update us when you can. I hope you continue to improve.
October 5, 2007 at 10:14 pm
JULIE, WHAT GREAT NEWS!!!! I am so happy for you, I hope you continue to do well and get stronger. Maybe you won’t need to decorate that wheel chair for Halloween after all! Have a great weekend, we will be thinking about you.
Dawn Kevies mom
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