Hi everyone, I am thinking this is probably going to seem like a mild problem, and I tend to be very overly anxious about anything new, but my Immuneglobulin g is down to 245. I have had no infections, been on Imbruveca for 2.5 years and my numbers are all really very good and I feel great.
My Oncologist suggested an Infusion just because of Covid running around and it getting so low. I am ultra careful with Covid precautions as I'm sure we all are, but Now I'm freaking out like I do with anything new. I feel like a big baby. I am very medication sensitive so she even suggested just 1/2 does for now.. Can someone tell me how these infusions went for them? How did you feel? Were they terrible? Thank you for any feedback!! ❤️😩
Written by
Cgolen99
To view profiles and participate in discussions please or .
I have been having for some time and it’s a doodle ! Worst side effects are tired afterwards because of premeds and boredom. So bring something to read and lots to eat to stave off the boredom. It is a very simple procedure and the infusion is weight based as is the speed they run it at, but they always start slowly and and ramp up gradually, and vitals are frequently monitored. I don’t see the point in a 1/2 dose !
I support what mrsjsmith told you, however, I am a lot like you. I put off starting the IVIG for 4+ years as I just never had infections. One day I got quite ill...very very weak, not connecting the dots and I had an appointment and I dragged myself in with the aid of my husbands putter being used as a cane. My Ig’s had been right around 250. I had had my labs done just 3 days ahead of my appointment as I did before all appointments and when the doctor came in and saw me and she said you are in trouble and you WILL have an IVIG infusion immediately and so I did. She told me the Ig’s had fallen to 127 and I had no choice. I truly don’t know why I had refused IVIG for so long....I just don’t like the unknown and I thought I was feel good until that day. They also gave me an iron infusion and I turned the corner and was feeling great! I receive IVIG every 4 weeks and have every since that day....that is just about 3 years.
Now I feel the IVIG’s are my security blanket and with the Covid I am so grateful that I am getting them. With your number being 245 I would strongly suggest you don’t wait. I now look back and think how silly I had been since they had been after me as soon as my Ig’s hit 250.
It does sort of shots two days.....the day of the infusion plus the next day there is a draggy tired feeling....no headache or other body ache as some say they have. But with the Covid as it is please don’t hesitate just do it!!!
I know you will not be sorry! I would love to know how it goes for you. I am so very happy you have decided to do this. As I said I fully understand your being apprehensive but you will not regret this.
One more thing I would like to share with you. When I am due for any vaccinations I always get then the day or two after an infusion when I am best a for making antibodies...this was at my doctor suggestion and I have just always done it for the Flu shot, Shingle shot, pneumonias shots and my DPT booster every 10 years.
I had my flu shot last week prior to knowing my IVIg had gotten so low. I should ask my a oncologist about this and the effectiveness after infusion? I am scheduled for 10/14. Thank you all for all the info and reassurance. 🥰
I am so happy you have decided to go ahead!!! Good for you. As someone told you there are many different brands out there. I prefer Gammagard but I will take whatever they have, my infusion center knows which one I prefer and only a few times have I had to take a different brand.
Because I drive myself to my appointments I defer my Tylenol and Benadryl until I get home and then I take 2 Tylenol and 2 Benadryl and have a quiet remainder of the day. God was smiling on me the day my doctor marched me across the hall for my first IVIG infusion.
You will do just fine....the hard part is behind you....you struggled with the idea of starting IVIG. All the very best to you and thanks for sharing!
IVIG monthly for 17 years. For me it was a Godsend! I was constantly sick and had reached a point where antibiotics had no effect. My IgG was @250 when I started infusions. I have no side effects. I did learn from one of my infusion nurses that if you do have a reaction switching brands usually takes care of the problem.
Just as with any other infusion, stay hydrated and let your nurses know if anything feels even slightly off. They will stop the infusion, assess the situation, and add more premeds and / or slow the infusion rate to prevent a reaction.
I’ve had IVIG every 28 days since February 2013. My infusions were interrupted twice and I got quite sick so I’ve been approved for life. I always go to the hospital thinking really positive thoughts as these infusions really work for me. Go for it!
I've had IVIG for several years, recently this was suspended due to COVID, but now I have restarted only a week ago. My IGg had dropped to 2.8. The normal infusion is only an hour for for me (after the initial ramp up).
There are different brands so some people have to find the right brand for them, I receive PRIVIGEN.
Also remember that there is a possibility that newly manufactured IVIG will contain COVID antibodies, which I feel is a bonus. I should have checked the infusion bottle for the date on manufacture on my last visit, just my curiosity.
I am very glad to get my IVIG infusion every month. The only side effect is feeling sleepy from the Benadryl. I know these infusions help to prevent getting colds. Please don’t worry and best of luck.
I have ivig every 6 weeks. Diagnosed 5 years ago with high-risk cll, started imbruvica, and ivigs. Feel fantastic. Never sick. Today is my 72nd birthday and I feel 40. My only reaction to ivig is great energy and health! I pray you do well.
Hi cgolen99 as others have said it's a breeze, I also have privegin it takes roughly 3 hours biggest problem is boredom, my local piu is located in the depths of the hospital so no phone /Internet been on it for 4 years now with only benefits no problems good luck
I have been receiving IVIG for exactly two years now, every 28 days. When Covid was really making a great impact, I asked if I could skip a month because I didn’t want go into a clinic/hospital setting. That was not a good idea. I am so grateful to be getting this very helpful treatment. As everyone has said, the Benedryl makes you sleepy.
I had no problems. I’ve had 6 or 7. They’ll give some premeds and start it slow and monitor you. Because of Benadryl I usually go to sleep during infusion and go home and sleep a couple of hours.
I had IVIG monthly for over a year without any issues, or pre-meds and they certainly didn’t check my obs apart from the first time. Made me a bit more tired but that’s probably because it was an early start.
I have been on IVIG for 5 years. I have had no reaction. Nothing. My mom did it before she died, and she had mild headaches even with the tylenol they gave, but that's it. I don't even take the tylenol or benedryl offered any more. I had an IVIG yesterday and went back to work afterwards. I am so thankful for it because my antibodies run low. Also, I am in a clinical trial, so right now my white count is a 1 and my neutrophils 0.7, so I feel I am getting a bit of added protection against infection in addition to the neulasta shot.
Hey Cgolen99, I didn't see it mentioned, but I started IVIG in early 2017 and the first thing I did was have a medi-port implanted in my chest. The port works great. It eliminates all that digging around for a good vein and all the bruising. Best of luck to you.
Amongst everything else I can't remember exactly how many I've had, probably 4 or 5. As noted elsewhere the Benadryl plus Tylenol tended to make me a appreciate a nice nap during the process. Can't think of any negative side effects.
On IVIG now for 4+ years. It was the only way to stop chronic bronchitis and has been truly essential to my quality of life. Piece of cake for me. I used to bring a book. Now I just sleep through most if it. I am more tired than usual a few days after, but at 80 on ibrutinib I'm tired anyway.
I get a huge amount of IVIG on a weekly basis. The important thing to remember is to also get a liter of Saline/hydration. The nurse should be infusing it very slowly, they will give you Benadryl or something like it as well as a Tylenol prior to you receiving the IVIG. 99% of the time there are no problems. The typical problem is a headache for a few days. My personal opinion is the IVIG will NOT help with keeping the Covid19 away. That may be the situation in about 6 months or a year as people who had it donate and those antibodies get through the system. Do a search for IVIG, check out Wikipedia & follow the links. It is not a big deal
Hi Cgolen99, I have been having IvIg infusions every five weeks for a long time now and have not experienced any discomfort or side effects. Please be assured you will be fine. It is great ibrutinib is working well for you so there is little to be worried about. The immunoglobulin will help resist against all infections. Don’t forget your flu jab. I’m about to start venetoclax plus retuximab next week which looks like a better option for me. Hopefully I will not react too badly. It will be a well monitored ramp up so I feel quite confident. With kind regards. Martin
Thank you so much for sharing your experience! I got my flu shot last week. 😊. It helps so much to be reassured. Wishing you good luck and good health with your new treatment option!
I have had 2 infusions to date. I have always had a problem with GERD and acid stomach pain. This problem has gotten progressively worse after each infusion. I'm not sure if it is the IVIG, the pre meds of Solumedrol, Benadryl and Tylenol , or if it is just a coincidence. I'm not meaning to discourage as it appears most people do not have any side effects according to what I have read on this site. However my GP did tell me that he has a lot of patients that are having negative side effects. I am not sure what to make of it all just yet.
I take a daily dose of Nexium but as of late have been guzzling Gaviscon and anti acid chews. I honestly have not heard a lot about GI side effects, My guess is the premed steroid or it may just be a coincidence. I see my doctor again next week.
UPDATE: Well i had my first IVIg Infusion today and you were all correct. It really was a piece of cake! Something new I don't have to be nervous about anymore.. I really wasn't too nervous anymore after reading all of your replies anyway. I am SO grateful for this site and for all of you! Thank you! ❤️
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Question about IVIG infusion
Does IVIG help fatigue?
IVIG - how soon does it benefit?
Newly diagnosed with questions 
