Has anyone here had IV-IG post car-t? If so, I have several questions. How long after car-t was it? How were your low IG numbers discovered? what is the process of the infusions like? Did you have any side effects from the infusions? How often do you have them? how many sessions did it take to get your numbers back up? and when it is satisfactory is the treatment continued?
I had my car-t early on - 2019. After the first 2 years I only had blood tests done annually. These are always full blood counts and usually show okay. Through Lymphoma Action I discovered that good lymphocytes don't necessarily mean good immunoglobulins. I get a lot of infections that don't put me in hospital but sometimes drag on for literally months, and after repeatedly asking, I finally got haemotology to check my IGs all of which turned out to be exceedingly low.
I begin IG infusions in a few days time.
I just wanted to hear your experiences. My hospital have given me no information about it at all, and don't have any information leaflets, although I have read information online from other trusts. But nothing is better than personal experience.
Hi Lellynelly let’s see if anyone with first hand experience picks up on your post.
My experience with IV-IGs is post my second Allograft (donor) Stem Cell Transplant (Allo SCT)
I had no infections post my second Allo SCT until about 11 months after. My regular blood tests were showing that my immune system during those months was showing as very weak…….. so we were very very carful then in Sep 2016 (my Allo SCT was back in Oct 2015) the infections came thick and fast with a number of winter resulting in a hospital stay…
5 times back in hospital (30+ days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Neutropenic Sepsis x2, passing out…….
But by then my bloods were all in the acceptable ranges and we had started to get out and about more.
My CNS kept reminding me that my immune system was still growing and like a long distance runner there were times when the endurance would be tested….,, building up the muscles (immune system)
By the 4th hospital stay (late winter 2018) my consultant said he had been given permission to give me IV-IGs…… I have no idea if I had actually been tested but said ok…….. IV-IGs are very expensive so he had to fight for them.
The process is straightforward, like getting blood, normally given over a few hours through IV…….
Unfortunately for me I had a significant reaction to them and even although we tried various drip speeds and significant antihistamines by IV we had to give up and I have never had them again.
I no have 2 sets of on the shelf, on repeat prescription antibiotics that I can take at the first sign of an infection developing….. specifically chest infections,
One infection got past my guard end of Nov last year and ended up with Pneumonia…… but I was able to keep clear of staying in hospital over night and some other antibiotics and my now fit immune system did the job.
Over the years I have talked with many people on this community and in the various Lymphoma Action Support Platforms… who have had IV-IGs after their treatments (not just post CAR-T or SCT) and had no problems having them.
The thing about IV-IGs is it’s not a long term fix…… it’s short term and would need to be topped up every so often……. I think every month-ish
I know some people who have had SCT for Leukaemia and self inject IV-IGs on a regular program of treatment.
