IVIG reactions

Kevies blood pressure was 130/90, he is 10 years old. Once we slowed the flow rate to 50, the blood pressure issue subsided. The headaches and nausea however remained. We premedicate with zofran for nausea, benadryl, and extra stregnth tylenol for the head ache. This was with our March infusion. Kevie also gets tired after. One thing I learned on this forum is to drink lots right before. This last infusion in May, we had more of a problem six hours post, so next time, we will continue to take the pre-med medicines for 24 hours after the ivig as suggested by Emily’s mom. Perhaps if they slow the next infusion down, you will have better results. Good luck, Dawn

I know if you have an elevated blood pressure during the IVIG infusion that it needs to be slowed down. Maybe ask the dr about having them infuse at a slower rate.

Do you premedicate with Tylenol/Motrin & Benadryl?

Make sure that you stay extremely hydrated. That should help too.

Kelly

I have the same problem. I just had my infusion on Thursday and was sick as a dog Thursday night with vomiting and a headache. My infusion buddy takes her infusion over two days so she doesn’t get as sick. I take zofran, ibuprofen and benadryl the night before my treatment and then the day of. I was also told I am not drinking enough the day of my treatment. My doctor said I should have close to a gallon (I know I thought I’d be floating away) of water while taking my infusion and then another gallon at home afterwards. It’s supposed to help with the flu-like symptoms after. I am usually sick the day of and the day after treatment and by the next day I am back to “normal”. I’ll try the water thing next time and see what happens. Good luck!

i sometimes notice an elevation in my b/p throughout my treatment. i of course always try to get good and hydrated the day before and the day of my infusion. i receive 500ml of ivig each treatment. i think that sometimes it’s just my bodies response to having that extra volume of fluid forced into the vascular system and the normal body response is an elevated heart rate and b/p, therefore i don’t worry about it too much unless is stay that way into the next day.
~flower

Kevin is only ten years old, so you probably do not have to go as slow as him
(50 max), but 250 seems really fast! We start slow and gradually build, 12,28,50. Maybe they could start you at 50, 90, 150 max? Just a thought. We also are going to continue to medicate Kevin after the ivig for at least 12 if not 24 hours. Good luck! Dawn Kevies mom 😮

Rhonda,
I usually drink plenty of water the day before. That night I try and stay up late and drink plenty of water. If I can stay away until the early hours of the morning drinking water, I’ve found that I can usually sleep through most of the infusion [6-8 hours]. At the end of it I usually feel a little rock but not too bad.

Blood pressure usually stays close to normal. I have had a problem with my hart rate, but I have chronic atrial fibulation. The next infusion should be interesting. They have implanted a pacer to stop the atrial fibulation. So far it has worked. 🙂

my ivig rate is 450/hr. it takes an hour to get there, but I found that no matter how fast or slow I get it (I was at 200 when I first started) that I still get sick, so I would rather get it over with so I can get sick at home. One thing that has helped in the past two months is that I have come home and taken a nap right after my treatment. My headache hasn’t been near what it was. Unfortunately, the nausea and vomiting are there still. I still get a headache but the HUGE throb is gone.

Drinking not lots, but HEAPS of water helps the nurses get the ‘line’ into you. I also helps you tolerate all the other side effects better. I try to eat very light -soups salads that kind of thing before, because between the water and pre-meds and infusions, well, eating light makes the diahrea s/e’s, well, get over with easier?

As for the BP changes, have other things happened in your life to raise it? To be sure, life that goes on around us does affect our BP… With IVIG BP can be normal, as can pulse, and one can have some sort of different reactions…Bring it up to your doc…be clear about what happend when during the infusion…Usually with any infusions…nurses try to speed the rate up…don’t let that happen…the headaches are not on the prescription…for a reason. Keeping notes of the infusion, the rates, the times and the brand etc…are invaluable in protecting yourself now and in the future.

I don’t go above 180, as it makes my heart jump out of my chest, and the headache is massive. I do 32grams each day for 2 days, 4 weekly.

A nap afterwards as Kel suggested works forme as well, by the time I wake up most of the symptoms are gone. I find the first day is the worst.

I drink alot anyway, but even so the infusion nurses call the cancer nurses to try and get a line for me, we do it by feel (i.e. we know there’s one in here!)

Definitely you should be the one who controls the rate. Each new bottle should be started slowly as well, even if they come from the same batch – you never know.

I know people who just want to get it in as fast as possible and go…but I would rather err on the safe side, to reduce the impact of all that viscous fluid on your system.

It is true what everyone is saying about premedication and drinking fluids. Things that also need to be considered are the brand of Ig being used and also the weight of the patient. When I was being infused with Gammunex they were able to go up to 355 per hr, with Carrimune only 185 per hour. Also Nurse weighs me before infusion and has formula given by pharmacuetical company as to what infusion rate should be. Occasionaly I do have some reactions like flu symptoms, but lying down and taking nap seems to do the trick for me.

Ron

I’m sad to hear that you are having complications with IVIG.
Sometimes the brand can make a difference. I received Gammagard
and had no reactions. I was pre-medicated with benadryl 50 milligrams
and Tylenol. The infusions were started slowly and gradually increased;
I don’t know the levels. Perhaps you can check what brand your infusion
was. I get sleepy from the Benadryl but have no other symptoms.
Hopefully, if you get the right one for you, you could be in less distress.
Pat

Hi,I’m new here. I was diagnosed with cidp when I was 76. My ivig went well. I did not have the amount you had. I received 40 each time four days with a break after two. My main reaction was a headache and being tired. I did this every six weeks from November through February. I did not improve so doctor discontinued. I had various treatments via five neuroloists but nothing worked. I,therefore, concentrated on pain relief. I now have no use of my legs. A cna comes every morning to bathe me and get me dressed. I then transfer to my wheelchair. At night another cna transfers me into my hospital bed and prepares me for the night. I hope you are improving. PWBOOKS

PWbooks,
Welcome. What other treatments have you tried? Some do ivig with solumedrol AND cell cept. others do pp, others pp followed by ivig. You may have needed it more frequently than 6 weeks. My 12 y/o gets it every 4 weeks and he is a mild case compared to others. Maybe you could ask to give it another try at a closer interval with maybe solumedrol. Good luck.
Dawn Kevies mom

Rhonda-I would say end of Jan. would be your next once a month treatment.
Another comment about your high blood pressure-some get a bad headache that causes the BP to go high and some get a headache from the higb BP. What I try to do is premedicate to avoid the BP high and headache both. Also avoid stress and think positive thoughts.

PWBooks-Welcome to the family. I have 2 questions-did you get a different brand of ivig? One brand may not work for you and another work wonders. Besides addressing the pain relief, someone should be addressing the nerve damage. My initial nerve damage from the CIDP is permanent, my neuro said, but I still get ivig to prevent further damage, and I premed with Tyl Ex Strength and Benadryl-2 of each and Motrin 800 1/2 way through my infusion, and I don’t have headaches any more, and if I start to have a headache I take the Tyl and Benadryl again, and that works.
A hospital bed can be boring-have you thought about a scooter for better”ambulation”?
Take care.

Hi Rhonda,

I just did this for the first time last weekend and watched everything like a hawk. I wound up with a big headache and my Bp never went over 120/70
I usually run 110-115/68-70. So in my case the BP had nothing to do with the headache and I drank many quarts in a day.

I believe it is part of the reaction to it. I plan on doing more benadryl. the hospital only gave it to me 1hr before the start. I had to ask for it later on when my vein got itchy.

When I do it at home I am gonna start benadryl the night before and stay on it til its done as many have advised. see ya-tim

Flow rate is different for each brand of IVIG. I am using Carrimune and the max infusion rate is 165ml. This is titrated up from 50ml. Infusion rate also depends on your body weight. A heavier person will be able to receive at a higher rate than a lighter person. Different brands of IVIG are of different concentrations which affects how quickly you may be infused and the time it takes.

Ron