Once IgG transfusions start, must they continue for the rest of my life

[markjeep51]

My IgG is 330 mg/dL at the moment , feel fine and have not been getting sick or infections. My doctor told me this morning that if my IgG goes below 300, then I should get an IgG transfusion. My question is; I had thought that once one starts transfusions, then typically, one must continue with such, periodically for the rest of ones life. Is there any discussion of this aspect in the medical literature ?

[Newdawn Administrator]

I had monthly IVIG for 15 months markjeep but the Covid crisis put a stop to it. My IgG is now just above 4 so it has not been re-started. I’d certainly not been told that once started, it needed to continue and I’ve suffered no ill effects from its cessation. I’ve even heard of people receiving IVIG periodically or as a one off. Your levels are very low but the guiding principle in the U.K. is primarily a low IgG plus incidence of recurring infections of a more significant nature.

Sounds like you are doing well without supplementation but it’s worth watching your levels and general infection response.

Regards,

Newdawn

[markjeep51 in reply to Newdawn]

Thank you very much for your reply. I was apparently under the misunderstanding that once given an IgG infusion, that ones body would then lessen its production of IgG and thus force one to continue on with periodic infusions. Not sure how I developed this thought. Once again, than you and cajunjeff for your thoughts.

[AussieNeil Administrator in reply to markjeep51]

It is an understandable assumption that there would be a feedback loop that would reduce your IgG production, but don't forget that other Ig types remain low when you have IgG infusions.

I actually calculated the half life of my IgG infusion boost when I started on IVIG. I used an average of my IgG counts as a baseline, then adjusted the half life variable until the measured counts of my IgG prior to my infusions most closely agreed with those count values over time. I obtained a result of 23 days, then subsequently discovered from Wikipedia that the IgG half life is 22 days. If I had stopped making IgG, my half life calculation wouldn't have agreed so closely with the established result, which of course is behind the usual 4 week IVIG regular appointments deemed appropriate to maintain a healthy, protective IgG serum level.

Neil

[wmay13241 in reply to AussieNeil]

IVIG infusion is based on one's body weight. For example the adult maintenance amount for Gamunex-C is 8 mg/kg/min (0.08 mL/kg/min). Source: gamunex-c.com/en/hcp/pidd-d...

[Fwanni in reply to AussieNeil]

Important to be watchful..my igg was 0.05,an 'unrecordedly low level' according to a new haematologist who instantly put mon monthly IVIG infusions 2 years ago. It is now

'holding' at 4, very few infections at last.

[cajunjeff]

Newdawn gave a great answer. As an aside that I hope you will not find nitpicky, we typically think of ivig as being "infused" as opposed to "transfused".

So what's the difference? If we add blood to someone's blood, we are transfusing. If we add something to the blood like monoclonal antibodies or ivig, we are infusing the blood, just as we might infuse olive oil with garlic. Adding olive oil to olive oil or replacing olive oil with olive oil would be transfusing it.

I know this only because I had both blood transfusions and IVIG infusions to treat my hemolytic anemia. Information sponge that I am, I actually looked up ivig on the internet while i was getting it. I was in bad shape and in no great position to question my treatment. I would just show up in infusion room and find out what was next.

Ivig is actually pooled plasma from thousands of donors. That scared me pretty good. Evidently they do all sorts of things to it to remove viruses and toxins, leaving just the good antibodies for us. Its amazing (and a bit scary) when you think about it, our blood gets infused with the antibodies from thousands of people we have never met.

I am worried too about being ivig dependent at some point. This site has been very helpful to me in that regard. We have lots of members who regularly take ivig and they seem to get along quite well.

I have a young house guest this week visiting along with one of my sons. Her adult sister has been insulin dependent since age 4 and they are hopeful advances in diabetes care will make managing her diabetes easier. I guess we all just play the hand we got dealt as best we can. Maybe in our life time we will see advances that help restore our immune systems, infusing stem cells into our marrow or something wild like that.

Sorry for hijacking your thread a bit. I have not needed ivig since my infusions several years ago and I think there is reason to hope you can go forward without regular ivig therapy. And if you (me) do need it, its good to know we have a lot of people on here who have adjusted well to it. Maybe the next time I need an ivig infusion, it can be pooled from the blood of a lot of golfers, lord knows my golf swing could use some help these days.

[Yakima53 in reply to cajunjeff]

What were you experiencing when you called yourself " in bad shape" during low IGg levels? If you don't mind sharing?

[cajunjeff in reply to Yakima53]

The ivig infusions were not due to low igg levels but rather part of a treatment for my hemolytic anemia. So far as I know my igg levels were in the normal range at the time. I am not sure of the mechanism of action as to how ivig helps hemolytic anemia.

I was in bad shape from the hemolytic anemia. My hemoglobin has dropped to 7 and I felt very weak from it. It resolved about 3 yrs ago and is kept at bay by my ibrutinib. I feel quite well now and my exercise includes daily 4 mile walks. I could barely walk to the mailbox with my hemolytic anemia.

[Yakima53 in reply to cajunjeff]

Gl

[Yakima53 in reply to Yakima53]

Glad to hear of your improvements! That's wonderful news. Seems like all these posts have been pretty down & sad. Its wonderful to hear an "up" Post!

[Phil4-13 in reply to cajunjeff]

🙂 Great explanation. Interesting possibility about an improved golf swing. A good friend of mine who is a skilled pianist and is my blood type, B+, has offered me her blood if needed.( I’m still in W &W.)Will I be able to play piano? So cool!!!

🎶😂 Sandra

[thb4747]

I think it’s like CLL itself - unique to each individual. I started IVIG in February 2013 because I’d had a series of ear infections. The infusions were stopped twice and, each time, I got very sick so, since 2016 I’m scheduled to have IVIG infusions (at a slightly lower dose) for life. I actually look forward to them as it seems very positive to me.

[Yakima53 in reply to thb4747]

I ag

[Yakima53 in reply to Yakima53]

I agree about looking forward to IVIG . I feel better in a few days post treatment. So 3-4 hours every 90 days is easy! Bring my Book or phone to play on. I was having severe Sinus infections, that were so miserably painful. 2-3 courses of Antibiotics over at least 6 weeks, even seeing an ENT. Since starting Immunotherapy I have not had one infection. I feel pressure but not requiring Antibiotics, just run the hot shower on my face and down some Antiimflammatories. I hope & pray the Immunotherapy continues to protect me against all the nasty bugs out there! I hope & Pray the same for you .🙏

[Yakima53]

I've been on IGG Immunotherapy for a year. Right after I finished 6 Months of IntenseChemotherapy, Infusions & Oral.( 40 Pills = $56,000!😳 Every 90 days I get my Labs done. My IGG levels are always low. I now always see the Doctor in the morning, discuss Labs, how I feel, any thing new happen since last seen. Discuss plans for future and current treatments. Then talk IGG and off to Infusion Treatment Room. I kinda wonder if it's Medical from CLL or Psychological that I feel so draggy, very heavy fatigue, "Zoned out"just before our visit & theq IGG Infusion.My Oncologist has never really responded to this when I mentioned it. I was never told IGG was for Life or wasn't. It does make me feel better after the infusion, especially a few days after.( I think.🤪) I'll ask. In the mean time he ordered a full body Scan. It's been almost 4 years since I had one at Oregon Health Sciences. My Dr there moved on so , I live in Yakima and have very good care at NORTHSTAR LODGE in Yakima, Washington 1ĺ with Dr Siva Mannem. Anyone heard about him?

Good luck, stay Covid free and CLL bother free

[otonal]

I’ve been on W&W for 4 years and can’t see IgG on my blood results. Is IgG normally tested in the UK? I have had a run of eye and urine infections with 4 courses of antibiotics in the last 6 months. My last Haematology appointment was brought forward and in person, but I am back then to 6 monthly phone consultations. I have pending Urology, Dermatology and Ophthalmology appointments. I know Covid is slowing things right down but worry about getting lost in the system. I guess I should contact the Nurse Specialist again, but have already done this twice.

[HopeME in reply to otonal]

This test wasn't done initially for me then it starting being ordered every six months. My first IgG test wasn’t done until at least a year after my first treatment had concluded for example. I think the test is done more frequently as your disease progresses, you have frequent infections, etc. Every time my IgG is tested it edges down a little bit. I was around 500 in November. Given your increasing infections you should inquire about your IgG levels at your next appointment or perhaps a couple of weeks before your next appointment so the test can be added (assuming your doctor agrees it is necessary). My blood is typically taken an hour before my appointment and results are ready to be discussed at the appointment. However, at tests where my IgG counts are tested I have noticed the IgG results don’t arrive for three or four hours so they cannot be discussed at the current doctor’s appointment as the test obviously takes longer to complete.

Interestingly, I haven’t had any infections in many years despite declining IgG levels. I’m sure this trend won’t last forever but it illustrates how complex the immune system is.

The bottom line is IgG tests are important but I don’t think it is critical for you to have one tomorrow. That being said please do discuss it with your doctor the next time. I hope that helps.

Best

Mark

[Yakima53 in reply to otonal]

In the US they are under Blood Chemistry's. You should ask your Oncologist about testing. I get infused every 90 days if my levels are low . So far they have always been low. I wasn't sure if it was a Medical Fact or Psychological issues making me feel better. After a year of treatments I've decided it's really helping If it was really just Psychological oh well," whatever gets me Through the Night"...

[Sepsur]

Hi @markjeep51

I’ve had IVIG infusions for the last 4yrs over winter months. Whilst slightly tedious being the downside, I’ve only benefited from it.No-one has ever mentioned the idea that I am IVIG dependent for the rest of my life - it’s been sold to me as being a precautionary measure against picking up opportunistic infections. It’s an infusion not transfusion btw 😊

[wmay13241 in reply to Sepsur]

My wife's NIH CAR-T oncologist recommended an IVIG infusion when her IgG drops below 400, about every 3-4 months for her. It is easy for her to track her IgG since she gets a monthly port flush and blood labs, including immunoglobulins.

[W00dfin]

I had FCR in 2011 which put the CLL in remission. Unfortunately it also zapped my body’s ability to make IgG. Due to the covid exposure risk I skipped IVIG appointments for 4 months. When my IgG levels dropped into the single digits I had to restart IVIG. After 4 monthly IVIG appointments my hematologist said I could space out the IVIG appointments to two months apart. Best wishes!