Low Immunoglobin levels

[Mokoia]

Tests have come back that my immunoglobin levels are very very low - much lower that you'd expect from my very early stage CLL ( white blood cells just 7.2). Have been referred to an Immunologist ( appointment some time in the next 4 months). Has anyone had similar experience with low immunoglobin levels and how did this impact on your health and susceptibility to infection? Other than melanoma my health has been very good in recent years.

[HopeME]

My immunoglobulins have been just above 4 for many years and I have been infection free despite two rounds of treatment so don’t assume that you will automatically have problems with infections due to low immunoglobulins. Obviously low immunoglobulins are not a positive but it it could always be worse. And if you do have problems with recurring infections you will likely have access to IVIG or SCIG to help supplement your immune system. Stay on guard and take common sense precautions and you will be able to manage your weakness.

Best,

Mark

[AussieNeil Partner Administrator]

Seeing an immunologist is excellent. Neutrophils are your most important primary responders to prevent infections, but how well they and other parts of your immune system work, depends on how much your immune system has been impacted overall by your CLL.

Keep in mind that with immunoglobulins, only IgG can be supplemented and it's expensive due insufficient blood and plasma donors. With immunoglobulins, it's not the count that's important, but whether what you make is a good match for the infection threats you face daily. That's why you need both a sufficiently low IgG count (typically under 4.0 or 400 in the USA) and some recent, serious infections to qualify for IgG replacement therapy. Another option is prophylactic antibiotics. See: healthunlocked.com/cllsuppo...

Neil

[mk2045 in reply to AussieNeil]

My IgG is in the 300's and rarely do I get an infection or cold. My CLL specialists just say that until I have recurring infections I don't need IVIG. Numbers and clinical presentation are not necessarily synced.

[kaymack]

My Immunoglobulin levels have been low since diagnosis in 2009 and became lower after treatment with FCR in 2013. After hospitalisations for Influenza A and then RSV pneumonia (during which I developed bronchiectasis), I was put on monthly Intravenous 1gG infusions. Three years ago, I changed to giving it to myself subcutaneously at home (into my abdomen). It's working well, and I haven't had a major infection or hospitalisation since. I live in NZ, also.

[ArtistBlacksmith]

All my immunoglobulins have been running about 25% of the target minimum all year and like you I have a very low lymphocyte count- started the year at 5 and rose to 9.6 by start of October. Prior to this year all my IG's were OK. This year has been the worst in my life for infections- infected cuts that make my leg swell up, cellulitis, diaorrhea that persist for weeks, chest infections lasting for months, I developed Skeeter syndrome (allergy to mozzie bites due to low IG- sounds funny but it is damned horrible every bite swells up like a golf ball. I am 51 and a farmer and normally active and robust. This month Haemo could justify starting me on IVIG (intravenous immunoglobulins) at a dose of 40g in 400ml (a lower dose than that for platelets) and I have been infection free. Though due to platelets tanking down to mid 20's have also started 2nd line of treatment with the BTKi Zanubrutinib. You may qualify for IVIg and if you do it will likely help somewhat.

[stevesmith1964]

HiMy IgM is virtually zero, IgG drops and when it does I have IVIG top ups. I have been in uMRD for 3 years and monthly bloods are stable. If was diagnosed stage 4 years ago my WBC was 3.6 and it's never been above 4 since. I am now 60 a full time dad to my 7 and 5yr olds and apart from a few minor covid infections. I hope your journey is as good as mine.

[oldguy68]

I have very low immunoglobulin and they want me to go on infusions. Going to a different oncologist soon looking for a different opinion.

[SeymourB in reply to oldguy68]

oldguy68 -

Do you get significant infections that require antibiotics or antivirals?

=seymour=

[oldguy68 in reply to SeymourB]

No do not get infections. Did have COVID but got through it in 27 days without the hospital. And I turned to 76 last week. I see you have low white count I have always had high.

[SeymourB in reply to oldguy68]

oldguy68 -

I not only have a low white count, I don't have any detectable B-cells. But I've been on treatment that included Obinutuzumab.

If you don't already get sinus infections and colds, you might not benefit as much from IVIG. You may have inherited good immune system or other genes and/or have good habits that let you clear infections with just your innate immune system.

I would say that the first time you get a severe infection, it might be time to do infusions. I see that you have an interest in type 2 diabetes. That presents some additonal risk as well.

So be safe now, or wait for a sign from the universe.

=seymour=

[oldguy68]

Also my white count was 16 last week.

[SeymourB in reply to oldguy68]

oldguy68 -

I don't think the white count figures into a particular level of immunity, except that lower is thought to be a little better. But I don't know that anyone has studied it.

You're on a BTKi drug, which kills both CLL and healthy B-cells. The CLL is also not at a minimum where B-cell immunity can recover well.

In general, we need a lot more research into immune function at all phases of the disease, on various treatments, and taking into account inherited genetics. We are all so different genetically.

=seymour=

[cllboy]

I got three bad sinus infections over the past winter (US) and was put on IVIG treatment every 4-5 weeks in May. So far I have been disease free. We'll see what happens during flu and then allergy season (I live in the Southern US).

[W00dfin]

I was started on IVIG during WW due to frequent infectious diseases like pneumonia. I encourage you to take normal precautions like masking and vaccinations including pneumonia.

[SeymourB]

Mokoia -

I gradually had lower and lower IgG in W&W. My allergist/immunologist did pneumovax titer testing, and I didn't do well at all - only making small amounts of antibodies to 5 serotypes out of 23, and none to others. I eventually started SCIG (SubCutaneous ImmunoGlobulin) therapy when I got repeated sinus infections. But I stopped when the pandemic began, because of low plasma donation levels. I figured that since I wasn't going anywhere outside the home without a good mask, and my wife was also masking at work, I had less risk.

If you get a lot of infections, an allergist/immunologist can also do immunoglobulin subclass testing to find inherited immune deficiency despite even normal levels of IgG or IgA. This might also qualify for IVIG or SCIG.

But the key is to not just treat the numbers. Infections are what count.

=seymour=