Was anyone else frightened to start Ivig treatments ?

[Luckyliss]

I like to consider myself a pretty tough chick but for some reason I’m scared to start then for fear of long term side effects like the FCR did to me by giving me autoimmune neutropenia. In order to supposedly fix that I need these Ivig drips two days in a row for 5 hours every 3 weeks.....

I worry that somehow will make my situation worse off even though it’s supposed to make my numbers better so they can give me the Gayzva.

I’m really skeptical 🤨 about this whole approach now

[johnl]

I've been getting these for a couple of years now, no problems and they have raised my IGG levels considerably. The only thing I don't like is the fact that I will have to continue them forever

john

[Luckyliss in reply to johnl]

Thanks for your reply john - it’s actually not for my igG levels it’s for my autoimmune neutropenia to try to stop the attack of my cells from the floudara chemo.. it’s unusual but good possibility it could work and insurance just approved it so I’m getting nervous of side effects. I’m sorry you have to be on it forever that’s no fun

[AussieNeil Administrator in reply to Luckyliss]

I hope by now that you have done enough reading of IVIG experiences on this forum to appreciate that any side effects are temporary. Given long term use is the norm once infections and IgG levels fall enough warrant specialist approval, that should be reassuring, particularky given your anticipated short term use.

Consider IgG as a transfusion of immunity from blood donors and you'll appreciate that long term risks are from the potential transfer of a viral infection, but given the screening, filtering and processing steps involved in IgG production these are extremely low.

[Luckyliss in reply to AussieNeil]

Thanks as always Neil for your simple and easy to understand explanation ! Get it now lol 😂

[mrsjsmith]

Hello,

I also have been on monthly infusions since December 2016 because of Sinus problems. They have, fingers crossed, kept that at bay. The nurses in my Hospital start the infusion slowly and gradually build up. I have had no problems..... only boredom, hunger and tiredness at the end.

Good luck and hope results will outweigh the worry

Colette

[Luckyliss in reply to mrsjsmith]

Thanks Colette I bring friends and mom w me to keep me unbored lol

[mrsjsmith in reply to Luckyliss]

I tried that but the friend I took was more bored than I was ! But useful for the coffee run !

[Luckyliss in reply to mrsjsmith]

Hahahahahah then they served a purpose indeed lol 😂

[thb4747]

Hi, I started IVIG in February 2013 because of the infections I was getting. It was briefly stopped twice - in 2016 and 2017 - and each time I got quite sick in a very short space of time. I’ve now been approved to receive a lighter dose (24mm instead of 33mm) every 4 weeks for life. Long may it continue!

[Luckyliss in reply to thb4747]

All the best to you ! Thanks for sharing

[BeckyLUSA]

I have been on IVIG since Sept 2016 for sinus infections, and have had not had one since starting until last month when we were trying to go to every two months versus every month. Now back on every month. Only issue ,like stated above, is boredom and a little bit of tiredness the rest of the day, which I think is due to the benedryl they give to prevent allergic reactions. They have been a godsend for me. I would not worry about side effects at all. Consider it a 3 hour rest period!

BeckyL USA

[Luckyliss in reply to BeckyLUSA]

Great thanks so much Becky

[wmay13241]

Per her NIH CAR-T clinical trial protocol, my wife gets an IVIG infusion when her IgG drops below 400. Since her CAR-T cells are still active they continue to attack all B-cells. Over the past two years my wife has received 6 IVIG infusions, about one IVIG infusion every 4 months. She gets 2 IVIG bottles via her port and the process takes about 4 hours. Her only side effect is sometimes, not always, she feels extra tired for several days after the infusion. The IVIG infusion raises her IgG from the high 300s to the low 700s. Note that the IVIG half-life is about 21 days. BTW she has not had any infections - the IVIG infusions are required by the trial protocol because she is considered immunocompromised.

[Luckyliss in reply to wmay13241]

Great 👍🏼 good info to share and Mich appreciated ! All the best to your wifey

[Mrsminton]

Prior to needing treatment, I received IVIG infusions for a chronic sinus infection (lasting 3+ months) and it took care of my sinus infection quickly. During treatment with BR (6 monthly treatments) I continued to receive monthly IVIG infusions. I was off of them for a while, but my IGG levels started dipping below the lower end of normal. I now receive them on a monthly basis. I have not had any bad side effects. They are supposed to start the infusion at a slower rate to observe if you have any negative side effects, primarily allergic reactions from what I have read. If no reactions, then they may increase the speed. Overall, it is a 3 hour office visit for me. I also get sleepy from the Benadryl they give you, but I don't mind reading, or watching some videos and just dozing off to sleep. Best of luck.

[Luckyliss in reply to Mrsminton]

Thanks so much for your input ! Hope you’re doing well now 😘

[nvp815]

You have already gotten so many great responses, not sure you really need another Just thought I would add that I have been getting IVIG monthly for the past year and have had absolutely no problems. I tend to get a slight headache and fatigue for a couple days following infusion but then I am back to normal. I used to go to the infusion center at my oncology practice for the treatment, but my new insurance now provides a home infusion nurse to come to my house. It is pretty cool to receive my treatment in my living room sitting on my sofa!! Takes about five hours beginning to end, which includes time to insert IV, give pre-medications and finally infusion. You will do great!! Best of luck.

Nan

[Luckyliss in reply to nvp815]

That’s awesome ! Thanks so much nan xoxo