Fast pace IVIG

Jenn, OMG!!!! No Way!!! you might be having this headache because your rate was increased beyond what you can handle. Have them slow it down next time, see if you get the headache afterwards, if you don’t than you know what your rate of infusion is. Everyone is different, rates are different for everyone. The hospital is not practicing for the patients’ well being-its in it for the $$. Those numbers didn’t come from a test group, they came from the manufacturer-they aren’t drs and should not be able to put that stuff in writing as protocol. Its wrong in my opinion! Hope You get feeling better. Take Care.

THat is nuts!!! Demand your doc write the prescription for the max flo rate you want!!!! Have the note say it is medicalneccessity. Kevin’s max flo rate is 5o. Another new member on the site was bumped up to 125 and started having chest pain, was lowered to 60 and STILL had reaction. She is going to ask that the next infusion have a flo rate max of 50. I do not know how the system works in Canada or how close you are to the US border, but would it be possible to have treatment on our side of the border if you get no results? My prayers are with you!! Good luck!
Dawn Kevies mom

Jenn,

I live in BC. I am also having issues with nurses trying to increase rate!
I had a terrible reaction when it was infused at 200. I told the nurses and would not let them go above 180. This rate I also got ill so next time I’ll demand it lowered to 150! We are in control and don’t let them push you through faster. One nurse told me the outpatient closed at 4:30 so we had to speed thigns up! I found out it is open until 5:30. That gives me a whole extra hour. I go in early in case of any problems.

Take control and damand the speed rate be slowed down…once you figure the speed out tell your doctor to write it on prescription.

Good luck
Rhonda

You need to find a new infusion place. That is CRAZY! Going at that high of speed can kill a person.

I agree that the headache was most likely from your infusion going so fast. You need to DEMAND that your infusion not go so fast. There is NO reason to speed it up – I don’t care what manufacturers, nurses or hospitals say. There is TONS & TONS of evidence that says that a slower rate is safer.

Do NOT let them push you on this. It’s very dangerous. Right now you are only suffering from a headache. Next time it could be MUCH worse.

This is such a bad situation. You know there will be people who lose their lives because of this before the hospitals et al get it through their thick heads that this is NOT practicing good medicine.

Kelly

I had my infusion at 160 but I found on the 3rd day that it was to much so they lowered to 140. I had mines in the morning. I got to go back for 3 more days of infusion will make sure it’s not over 140. I know they told me some people get it at 200 but I think that person doesn’t mind. I tell them what works for me and the nurse slow it down.

I get my infusion at the Ottawa Civic hospital in Ottawa.

Sue

Hi Jenn,
I do not want to jinx ourselves, but with Kevin’s last infusion, I think we figured out a plan for the headaches. Start with 2 reg stregnth tylenol (it is 150 mg more than a extra stregnth) 1 hour later follow up with motrin. Of course quiet surrounding, ice pack on the head and a full tummy. We do this around the clock! Hopefully it will work next time too.

Also, since you are old enough, unlike Kevin,maybe you could consider immitrex, it is for migrane headaches. Good luck!
Dawn

The faster rates are also a risk for “blowing” the vein. If it is a small vein it can’t tolerate that type of rate. If the IVIG is going into a port it could without difficulty run at 200 cc hr because it is a vein with a much larger lumen. The manufacturers guidelines are supposed to be guidelines that the nurses can follow safely for administration unless a hospital has a policy against doing it a certain way. I’m not trying to support the manufacturers but they do research before the drug is approved by the FDA.

Interesting. At my hospital here in England, I would normally have the stuff pumped in at 200. But during my last infusion the nurse said that they had received guidelines stating that the max they could give is 180. And we get our Ig from the USA.

Go figure.

Deb
London

My own experience in the US that’s worked for me is: 24 hour pre IVIG hydration, Tylenol and Benedral prior to infusion, infusion start @ 50 and increase by 25 every 15 minutes. I max out at 200. I’ve no headaches or flu symptoms. I began getting infusion every 3 weeks and now am up to every seven weeks. My improvement only began after my doctor added 80 mg/day of Prednisone which has now been reduced to 2.5 mg every other day. I’m very fortunate and know it.

Hey Jenn,

I get headaches often after IVIG. Too try to combat the side effects, I continually medicate myself with the pre-meds (Benedryl and Tylenol) for the rest of the day of my infusion and the day after. This helps to keep from getting severe headaches or one at all. I weigh 105 lbs, recieve 21mgs of IVIG bi-weekly, and my infusion is run at 150 along with saline. I also have found that the more saline I take with it, the better I feel. I stay until all of my fluids are are completely gone!

Take Care, I hope things are going well for you!
I wish you and your family Happy Holidays!

Emily

For me hydration is truly key….start gulping lots of water two days before. You know you are at the ‘hydrated point’ when you have to use a bathroom about every 20-30 minutes…nothing less.
That helps get the catheter into you and can minimize side effects.
I myself have tried combos of a steroid pre-treatment, to heaps of Tylenol, to a combo of that and Benedryl, to now, heaps of Benedryl…enuf to knock out a football player..all I do is doze litely.
But any of these approaches helps to minimize the side effects. Critical is to speak to your doc if you have ANY side effects and be as concise as you can be about when it ‘hits’ you in terms of the rates increases. The rates SHOULD be adjusted accordingly but, you will have to be on the alert for any nurse trying to do short-cuts. There are no short-cuts with IV administration, ever.
I get infusions at home now, and the company’s policy is to never ever go over 240…Plus with each package of supplies comes a set of doctors’ instructions, which the IV nurse reviews, signs and takes with her as paperwork…You too should know what these instructions are, and be sure that they are being followed to the last I dotted and T crossed. Any doubts ask your doc…let the doc work it out with the infusing company… Do not get in the middle for any reason, unless something really wrong is happping in the here and now…then call your doc’s office and state situation and have doc speak to infusing nurse.
I once had a too fast rate and was severely headachy for over a week! Probably something like aseptic meningitis but the hospital staff didn’t know about such things…they got informed when all was said and done. None of us need to suffer due to any ignorances. We have to learn all we can and then know what should and shouldn’t be. It’s harder tho when you’ve got a nasty reaction tho…but stick to it. Hope it gets better in the future.

I work in a clinic in which lots of immunoglobulin is given (to children and teens) for immunodeficiency diseases and autoimmune processes (mainly blood or cancer associated) and so have two other points to make.

When people make the “rules” about infusion rates and maximums, the main concern is an immediate reaction–allergic or damage to the kidneys are the two most serious because a severe reaction can cause death and serious disability. With immunoglobulin, there are also delayed reactions, though, like the headaches. You may not have an acute allergic reaction at a rate of 200 ml/hr, but it may lead to the slower-to-manifest headaches.

Second, it seems that people with neurologic diseases are much more sensitive to immunoglobulin infusions than other people. For our children born making too little immunoglobulin, we are just replacing this. For the blood problems, the target is blood and symptoms with immunoglubulin infusions are only side effects since blood cells “don’t complain!!”. My guess is that that we are more sensitive because not only do we get side effects from the infusion, but also the immunoglobulin infusions cause alterations in something that can protest (nerves) when the IV IgG coats or displaces the autoantibodies that have decided to irritate our nerves. This is a hypothesis, but it makes some sense from an immunology point of view. Whatever the reason, people are different and what GBSer can tolerated is LESS than what others can tolerate apparently almost always.

All this being said, the advice people have given you makes sense–hydrate, tylenol and anti-inflammatory medicines (ibuprofen or similar or prednisone/decadron or similar) and benadryl. In my experience both personally and at work, these make a big difference in the headaches after IV IgG. Do know, however, that the “doses” given depend on the size of the person (since answers included doses for children and adults) and different other medications. Each person is different.

With Hope for cure of these diseases.

i just had my 2nd infusion and after letting them know about my bad headache the first go, they slowed it anf the pharmacy suggested adding a saline drip to the IVIG (they go in together). Not sure if that’s what helped, but I did not have a headache this time. Good luck!

Is normally takes more than eight hours for my IVIg infusion. This Friday there was a new person there, and he decided to increase the rate. I guess he was in a hurry to leave. I was out of there in less than five hours. As a result I’ve had a severe headache.

I drank plenty of water prior to the infusion just as I have every other time. The only difference was the rate. This is the last time that is going to happen. Since I have to use a cane, if my head hurts the next time because they rushed the infusion, I think I can make good use of the cane…;)

I’m going into my third year of 3 days biweekly of IVIG. I get 50 grams a day that is now 10% solution and it has certainly cut down on the side effects. Was told the 5% IVIG baggy contained too much fluid for me and sometimes it causes severe eye aches/migraines-they were right. Now my headaches are much less and I take Tylenol with Benadryl for 2 more days after I finish the round of infusions.

I watch the pump rate to see if it gets over 150. Sometimes the home health nurses try to bump it up to 180-200 and I get ill. I have the rate reduced if I start to feel bad.The pump rate has a lot to do with length of plastic tubing, tubing thickness and how the pump is working as it can slow drip flow.Lately I’ve asked for a bag of simple fluids added as I am usually dehydrated-makes me feel better.

I had a big scare a couple of treatments ago. They were running my IVIG at 250. I was admitted to the hospital during that one. Everything is kinda a blurrr. Headache, temp up, throwing up, blood work was crazy. I just remember the intense pain in my legs and head. It was difficult to even talk.
My husband came in the room to find me on O2 and they were pumping me with drugs so fast he couldn’t keep up with them. I do remember the morphine though….
Now things are better. I start at 25 rate and every 15 min we increase. They check blood pressure and temp every time they increase. My max now is 125 over 6 hours. I get 40 grams a day for 3 days every 4 wks. I have to keep one eye open though because when i go in patient every single nurse trys to increase my rate!!! I just put a sign on my infusion pump that reads GO CHECK MY CHART BEFORE YOU TOUCH THIS PUMP. That makes them mad but it works haha….
Good Luck to ALL and i hope this year rocks for everyone!!!!!