had first dose of IVIG yesterday, think it was 3 grams. Pre med with Zyrtec and Tylenol. Half way through infusion had allergic reaction, shaking chills itching, no fever no outward symptoms like hives. They stopped infusion, medicated me with IV Steroid 120mg and IV Benadryl 50mg, felt better after 20 minutes; in 30 minutes they resumed infusion without other issues.
Around 3am felt itchy, took 25mg oral Benadryl. 0800am maybe slight itchy with mild headache, took Zyrtec and Tylenol.
I was told this could happen. Wondering if others have any helpful next day insight? I have read, for itchiness to take Zyrtec for a few days. Thinking will see how it goes, if does not subside will notify MD or Infusion Pharmacist.
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Davidcara
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I recall several years ago that different members had reactions to specific brands of IVIG. You may want to pin down exactly which manufacturer made the product you received and then try other brands to see if the side effects are less.
Here is a link to the 595 previous discussions about IVIG reaction:
I have Privigen, cannot remember the quantity but it is a small and big bottle. At full bore takes 90 mins for the infusions plus change over time.
Had a reaction on first one so had premeds(paracetamol and Portion) from then on. Last summer I was chatting to another person receiving IG who said they didn't have the pre-meds. I tried without and have not had a reaction since (seven infusions).
Fortunately I haven't had any issues. But I am pre-medicated with benadryl and IV Steroid every time. You should be sure they do that for you going forward. BTW, after 7 months of IVIG I have not had any illnesses [SOUND OF KNOCKING ON WOOD].
I had the same issue with IVIG on the first dose and went through the same process. I now take paracetamol and Chlorphenamine an hour before infusion. I have not had any problems and been on IVIG for a year.
The one thing that I can’t see mentioned is the speed that the infusion is started at. Check next time you have one and ask to start at a low rate. I had a reaction one time mine was started at a faster rate. At my hospital the rate is ramped up every 30 minutes and vitals are checked as well.
Interesting about the speed issue. I've noticed that my first bottle (the larger one) takes a good bit longer than the second smaller one. It wasn't the size of the bottles, because I noticed that the drip speed was greater with the second bottle. I asked the Nurse and she said that they start slower on the first bottle to make sure your reaction to it is good. Then if your fine, they speed the second bottle up a lot.
I had a few issues afterwards with itchiness, joint pain and headache. Told my team and in addition to premeds, I teceived a steroid. After that, did great. Plus the steroids gave me lots of energy.
Remember our journeys, although similar, are individual. That is why it is critical to communicate with your care team to get the care that is best and works for you.
I've been getting IVIG Infusions every four weeks since the beginning of October 2023. When I saw my Oncologist at Dana Farber in September 2023 for my regular six Month visit (at that time still on Watch and Wait since March 2018) she finally told me it was time to start treatment. I wanted to wait until January 2024, because I knew the Medicare Part D was changing dramatically in 2024 (end of the Catastrophic Stage of coverage) and it would save me many thousands of dollars. She agreed and said I should start IVIG before starting Zanubrutinib anyway. She said that our Immune Systems are already severely damaged by the CLL, and that the medication we use (the Bruton Kinase Inhibitors) would know the Immune System down even worse. So I started IVIG I think October 1, 2023.
Its been a life saver form me. I had been getting sick once a Month, with each cold and cough lasting at least three weeks, and since IVIG I've only been sick about three or four times. Each time I've gotten sick (until this last one I just beat after fourteen days), I've beaten them in four or five days.
Each of my IVIG treatments start with oral Tylenol, and then they start a Benadryl drip. I love the Benadryl drip because I've never been a good sleeper, and I doze on and off during the first of the two bottles of Brukinsa (Zanubrutinib) that I get. Then I force myself more into awareness during the second and faster bottle, of the approximately three hour infusion.
In my first few months of the infusions I started coughing a good bit during the first bottle. I hadn't been sick at those times, so I'm guessing it was the reaction to the Immunoglobins and not Benadryl. I've taken Benadryl here and there in my many decades of life, without ever having a reaction, so my thinking is the coughing was an allergic reaction to the Immunoglobin infusion itself. Benadryl is an anti allergen medication, so it doesn't make too much sense that it would be the Benadryl. My guess is your reactions have not been because of Benadryl; instead, a seemingly mild reaction to the Immunoglobin infusion.
I'm now in the beginning of my second year on Brukinsa and IVIG, and I've mostly stopped any coughing during the IVIG about five months ago. The coughing decreased over time with the infusions, so I guess my body adjusted.
My reaction was quite different. I experienced a drastic drop in my blood pressure and the inability to take a breath. Strangely, it was with the second infusion. The first one went fine. So they may have been a difference in the rate they infused or it could’ve been a different product. I also had an anaphylactic reaction to the first obinatuzamab infusion I had. My body seems to be very sensitive to any foreign substance. I always had allergies and over reactions to bee stings and mosquito bites. Fortunately, for me in both infusion cases adjustments were made to the speed of infusion and added medications enabled me to continue with these meds.
I do not get your symptoms, although I have had similar issues with different chemo drugs in the past. I get very light headed when I get my IVIG infusions and it does last several hours after the procedure is complete. My oncologist had the flow permanently reduced and it helps but didn’t eliminate the issue. Hopefully your body will start accepting the IVIG in future infusions. Sorry to hear that you’ve had such a bad reaction.
oh sorry to hear about your experience with immunoglobulins.
I always premed myself hours in advance of going in with a combination of an anti-inflammatory, called Celebrex, which does not affect platelet function, Tylenol, and Zyrtec.
I've been doing this for seven years and have never had a reaction like yours.
I do recall that with my very first few dosages of immunoglobulins that my doc also premed me with steroids, but I don't do that anymore.
Occasionally, I get flu like symptoms for 24 hours while other times I don't.
I hope you get well and tolerate as they have been a huge blessing for me.
Prior of starting, I had bacterial sinus infections and every little scrape or cut on my hands got infected until I finally had to give up my surgical practice.
After starting immunoglobulins, my cuts and scrapes do not get infected even on treatment, and I have had only one bacterial, sinus infection, and one fungal sinus infection in seven years as opposed to being sick 11 out of 12 months every year.
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