Hi folks,
Just wondering: how often should one have their IG numbers checked?
Also, if a person were to need/get an IVIG infusion, does that mean they’d pretty much be needing them on repeat forever? Or can one or just a couple be enough?
If the questions are annoyingly dumb, sorry!
—Dave!
Your questions are quite understandable, given the importance of adequate counts to reduce the number of infections and the cost of IgG. Checking counts soon after diagnosis, then every few years, as they generally trend down slowly over time is an appropriate approach. More frequent checks are needed when you begin infusions, to make adjustments to the infusion dose.
Sometimes your counts can improve, particularly after treatment, but generally once you have serious enough infections to warrant the use of IVIG or subcutaneous IgG, you will probably need them for the rest of your life, most likely fairly regularly.
Neil
my doctor checks those numbers every time I get blood drawn.
Yes I have my IGg numbers checked on every blood draw that I have, currently every 3 months.
Mine are checked a few days before I go for IVIG ever 6 weeks. I have been getting IVIG's for about 5 years now.
Chris
I was getting them checked every week when I began treatment with O&V but at around the fourth O infusion I noticed they haven't been checked with my weekly blood work. I am going to ask at my next appointment why they stopped. My numbers were all pretty good maybe that's why. I don't know. I haven't had any infections or sickness since starting treatment.
In line with Neil I was told when I started IVIG 10 years ago that it would be for life.
Same. They check mine right before the infusion. Seven years every 28 days for me
Hi
My bloods are checked monthly and have been since diagnosis and treatment in Nov 2020. I am currently having ivig supported by doxycycline through the winter as my IgGs dropped in November. I expected to stop in March, I have had no infections since remission in 2021 , except covid. Neuts and wbc dropped last months so expect I will have filagstin jabs next month, all part of my consultants approach as I live a full pre cll and pre Covid lifestyle which he supports
mine is checked at every blood draw which for me is every six months. Over the last seven years I have watched it slowly drop well out of healthy range but I was shocked and overjoyed when my last labs showed my IgG had moved back into the healthy range. I am still W & W but didn’t know that this could happen. Needless to say, you would think I had won the lottery.
Hello DRM18
Depends on your doctors' concerns. I for example have not been in hospital for 38 years other than 5 day stay to check for sepsis, which I did not have during first B+R treatment. I have never had my IG checked as I am rarely sick with anything. Blessings.
I am glad you asked this question. I just read the responses. I am W&W, but Was just about to start acala on January 19 when my immunoglobulin's were checked for the second time in 4 years. My numbers were very low so instead I received an IGIV. The nurse practitioner emplyed one and done but based on these responses it does not appear to be that way. Just have to buckle up. No telling what's around the next curve.
my IGG levels are all checked every month with my other labs. I typically need the IVIG every 2 mos
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