Need help in understanding immunoglobulins..

[Curling123]

I have a question about IGG. I have noticed IGG is slipping gradually. Now at 6.25. I keep reading the term IVIG on this site and I am wondering will we all have to have IVIG eventually as this disease progresses? As the number lowers, does it mean we will have more infections or hospitalizations without IVIG? I would rather have IVIG now before it gets too low. Thank you for any responses. Immunoglobulins are new to me. Just trying to get around WBC, platelets etc. and what they mean going up or down!

[AussieNeil Partner Administrator]

You typically require both your IgG to be below a threshold, typically 4.0, but it depends on the country and some rather serious infections, usually bacterial, before you qualify for IgG infusions. These can be via IV (IVIG), or subcutaneously (SCIG). It's quite possible to have an IgG count below 3. 0 and still not have serious infections, or, more concerningly an IgG count above the threshold while having serious infections, so that you don't qualify. IgG is about the same cost as gold by weight.

Neil

[lankisterguy Volunteer]

Hi Curling123,

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This may get a little confusing since Canada uses a different measurement system than the USA, but I will try to keep it simple.

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Some CLL patients see their IGG levels reach a certain low level and experience frequent infections, and their Hematologist can prescribe an infusion product IVIG to boost the IGG levels up.

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IVIG is collected from the blood of hundreds to thousands of donors and therefore fairly expensive, so the provincial health system in Canada probably has a strict criteria for who can get the product.

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The Canadian system

healthlinkbc.ca/tests-treat...

IgG.

SNIP IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus).

exeterlaboratory.com/test/i...

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LOW IgG IgG 5- 5.9g/L

Mild hypogammaglobulinaemia is commonly nonspecific. Suggest repeat in 3 months. Suggest discussing with clinical immunology if there are recurrent bacterial infections.

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IgG 3-4.9g/L

Moderate hypogammaglobulinaemia is often associated with recurrent bacterial infections. If persistently low, consider discussing with Dr Claire Bethune, Consultant Immunologist on 01752 431675 or email on [e-mail].

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IgG 0-2.9g/L

Significant hypogammaglobulinaemia confers a high risk of serious bacterial infections. Suggest check full blood count and consider secondary causes. Please contact Dr Claire Bethune, Consultant Immunologist on 01752 431675 to discuss or email on [e-mail]

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USA Typical Serum immunoglobulins (IgG, IgA and IgM) levels in the USA have reference intervals for healthy adults: IgA 70–400 mg/dl, IgG 700–1600 mg/dl and IgM 40–230 mg/dl [35].

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Len

[lankisterguy Volunteer in reply to lankisterguy]

Oh I forgot to mention that an IVIG infusion will last about 4 weeks until it is no longer effective in raising your IGG. Some people can go longer between infusions by a few weeks. Other methods use a sub cutaneous method of injecting the IgG product into the fat layer below the skin on your belly or similar. This can be done at home and is often done weekly. -

Len

[bennevisplace in reply to lankisterguy]

Thanks Len.

For the benefit of dummies like me, I can recommend your healthlinkbc.ca reference under "The Canadian system", which explains in simple terms what each kind of immunoglobulin does and how they're distributed in the body.

[Curling123]

Thanks Len. Very helpful info. Will ask doc tomorrow on my visit if and when he would suggest it and how is it financially covered. Putting questions together before my three month visit. Much appreciated.

[Alex830]

It really depends, my IgG have never been above 350 but I have no history of recurrent infections. I dropped below 280 and my oncologist recommended IVIG but insurance refused treatment which in hindsight was probably a good thing for me.

[AussieNeil Partner Administrator in reply to Alex830]

Other than the cost, there's not much of a downside for IVIG (where you have the risks common to all infusions) or better yet subcutaneous IgG, which is so safe, you do it at home without medical supervision.

[Alex830 in reply to AussieNeil]

I have the weird CLL that caused heavy immunoglobulin G deposits in my kidneys which resulted in acute kidney failure. In my case more immunoglobulin g would probably have caused even more damage.

[AussieNeil Partner Administrator in reply to Alex830]

How so? Your CLL may be making weird IgG that deposits in your kidneys, but IgG from healthy donors shouldn't do so.

[Alex830 in reply to AussieNeil]

Considering IVIG consist mostly IgG g-1 which was found in my kidneys, I would not want to add more to my blood.

[AussieNeil Partner Administrator in reply to Alex830]

There are billions of possible combinations with IgG. I suspect it's the unique combination made by your CLL which is the issue, bearing in mind that it's rare for CLL to shed immunoglobulins. Its probably due to some weird DNA damage in the IGHV gene.

If you ever get to the point of having IgG recommended again, please discuss your concerns with your oncologist. Remember, IgG batches are produced from blood and plasma donations of over 1,000 donors to give good immune coverage.

Neil

[Vizilo]

I also live in Ontario and have been on SCIG for about 2.5 years. SCIG is an at home version of IVIG administered under the skin once per week. This method needs no hospital visits, is relatively painless and infection-free and takes about 60-90 minutes per week.

Unfortunately, Ontario doctors can not prescribe it based solely on the levels of your IGg. Because of the high cost and scarcity of immunoglobulin (used in IVIG/SCIG), generally, the only way you can prove you need it is if you are hospitalized with a serious infection. My cll specialist mentioned for years that my IGg levels were way to low and I was at a risk for serious infections. But he was unable to prescribe IVIG until I actually caught an infection.

It wasn’t until three years ago when I was hospitalized for septicaemia (a simple bacterial infection turned into blood poisoning) that Ontario agreed to monthly IVIG. Luckily, that was converted to SCIG a few months later just as COVID was taking a hold.

Knock on wood, not so much as a cold in the last 3 years…..

[Curling123]

Thank you all for your replies. Doesn’t sound too promising that we have to end up sick enough to be hospitalized before anything will be done, especially when we are trying out best to keep well and out of hospitals.

[Ibru]

My husband's IGg is 50% lower than the threshold for IVIG (about 200 in USA measrement) and has never needed IVIG. He has had CLL 10 years and been on ibrutinib for 8 years. In that time he had bronchitis once, which resolved with antibiotics and had a head cold once, which turned into pneumonia with three days in the hospital. He totally avoids crowds, does not have grandkids, washes hands like crazy, wore a mask during flu season even before covid. I, his wife, isolate from him if I have a cold.

This lifestyle has worked so far, but is not for everyone. He is an introvert. He has never needed IVIG.

[Curling123]

Thank you for your response. From some of the responses not everyone with lowered IGG gets sick. Guess it depends on one’s social activities too. Would be safer avoiding people and where necessary wearing a mask, but as you said, it’s not for everyone but works for you both.

[AussieNeil Partner Administrator in reply to Curling123]

It depends on what coverage your own IgG gives you against the infections you encounter. You might have high titres against diseases that are now uncommon and low titres against commonly encountered illneses or vice versa.

Neil

[Palmetto]

My husband has had consistently low IGG for years, below 3 but it was because of two hospital admissions in 2 months for pneumonia that his oncologist said he had reached the threshold.