I know that there are some substances you can ingest, that might make your body atrophy when it comes to producing it on its own. For example, I have heard that if you take a lot of melatonin for a long period, it might impair your body’s ability to make its own after a while. I am wondering if that is a potential risk with IVIG. If you’re borderline on needing it, are there any studies as to whether it might make you dependent on it. The reason, I ask… is that I am thankfully uMRD and feeling the best I have felt in years. I am not currently on any medication… but I qualify for monthly IVIG based on old measurements. I like being able to get it, but not if it means I will become dependent on it forever. Does IGG recover with successful treatment on its own? Or, is dependency not really a factor with this type of transfusion? Thank you!
Kvb-texas
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Kvb-texas
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It's a good question and one that I have also pondered. There doesn't seem to be any feedback from the levels of immunoglobulins in our body from what I've read. Rather our body regulates the production of immunoglobulins based on B-cell receptor sensing of the specific antigens in our environment. When our healthy B cells mature after exposure to a new infection or vaccination, we get both plasma cells that churn out antibodies, plus we get memory B cells that continue circulating in our blood for decades. When these memory B cells encounter the same pathogen or a variant, they go through another matching process where plasma and memory B cells are produced with greater affinity. That's why boosters are regularly needed for the flu and coronavirus.
I've been encouraged by reading that a few of us have experienced significant recoveries of our immunoglobulin production after treatment with targeted therapies. It's not been my experience, but encouragingly for me, given I've been on regular IgG infusions now for over 6 years, the amount I've needed per week has actually slightly gone down over that time. My IgA and IgM levels worsened somewhat during treatment and then improved back to around where they were prior to treatment, but I didn't see a noticeable drop in my IgG, so I must still be making about a third of what I need to keep me reasonably well protected, even with the valued assistance from thousands of blood and plasma donors.
Thank you, Neil, that is really good information. Glad to hear that you’ve been able to reduce the dosage and partially recover. I’ve been pondering about maybe pausing for a while to see what happens.
Hi Neil, this potential problem is new to me and after more than a decade of 3 weekly Infusions it never crossed my mind that it might affect the bodies ability to produce antibodies.
You've had a complicated health journey and I appreciate you may not want to say much on an open/unlocked post, but have your IgG requirements changed? You've had a fairly long period of Ibrutinib maintenance therapy which can somewhat help with T cell recovery, unlike other BTKi drugs. Also, some of us manage to gain reasonable responses to vaccinations on ibrutinib, which indicates that our IgG production remains reasonable.
For what it’s worth, I had been receiving IVIG every 4 weeks for over 10 years. A couple of years ago my hematologist reduced the frequency to every 8 weeks. My levels continue to be within acceptable range.
Hi W00dfin, that’s interesting to know. It now seems my haematologist’s concerns regarding my long term Ibrutinib relate to cardiac toxicity but I will know more when I see her.
I have been receiving IVIG for almost six years now following FCR treatment. The tried lowing the dosage and increasing the time between infusion right before COVID came along and I started to get sick all of the time. I had pneumonia three times, bronchitis twice and a yeast infection in one lung. This was all over about a year and a half. They then increased the dosage and lowered the time between infusions to every five or six weeks and I didn't get sick again for about a year and a half until COVID finally got me.
It really seamed that increasing the dosage and lowering the time between infusions helped. My CLL doc has told me a few times that I will most likely be on IVIG for the rest of my life. It is interesting to think about what you posted here though. It would be nice to know if they will have to keep increasing the dosage as my system get too used to getting the infusions.
Thank you for sharing your experience. It is good to hear how effective it has been for you. I may be in the same situation, but just don’t know it because I have been on it for a year and hadn’t checked to see what it would be if I paused the transfusions. I also didn’t realize that there was a “dosage”. I thought it was all the same. I am not even sure what my dosage is. My chart says Octagam (PF) (Immun glob G(IgG)-Malt-IgA 50+ (PF) IV 10 %).
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Early use of Ibrutinib or is W&W still a needed strategy?
IVIG infusions
Starting IVIG Therapy 
IVIG
