IMMUNOGLOBULINS G, A, M

[Tapps]

Blood labs just came in. Worrisome!

Not sure how worried I should be, these test all came in extremely Low.

IMMUNOGLOBULINS G, A, M 

Anyone familiar with this test?

[AussieNeil Partner Administrator]

Welcome to a very common symptom of CLL, Hypogammaglobulinemia! This is the medical term for having low immunoglobulin/antibody counts. It occurs because CLL cells inhibit plasma cell production. (Normally, dendritic cells take parts of an invading bacteria, virus, etc to lymph nodes near the infection or vaccination site. Germinal centres in the nodes swell, as B and T lymphocytes work together to produce lots of new B and T cells that recognise the invaders. The B cells mature into plasma cells that are our immunoglobulin factories and memory B and T cells keep circulating in the blood on the lookout for a repeat infection.)

IgA is what helps keep you safer from respiratory, gastrointestinal and urinary tract infections as it concentrates in your mucous membranes. IgG is the most important immunoglobulin and many of us are on IVIG or subcutaneous IgG to boost this to protect us primarily from bacterial infections. Depending on where you live, you need to have an IgG count below 400 or 500 plus some serious recent infections to qualify for these infusions. The quantity available is limited by blood and plasma donations. IgM is the first immunoglobulin made after a vaccination or infusion. Later, plasma cells class switch to make IgA or IgG.

How low are your IgA, IgG and IgM results? Don't worry if you are doing well infection wise; your mix of immunoglobulins is still protecting you. Conversely, it's possible to have good counts, but they are of the wrong kind. For example, you could have lots for the common bugs you experienced in another country, but which you seldom encounter where you live now.

Neil

[AussieNeil Partner Administrator in reply to AussieNeil]

Tapps, 3 months ago you were talking about starting what I think were IVIG infusions: healthunlocked.com/cllsuppo...

This is why you have had this immunoglobuins test, to see how your IgG counts are increasing. Based on my experience, it will take you about 4 months for your IgG count to stabilise if you have have them monthly, after which your specialist may adjust how much IgG you need.

Neil

[Tapps in reply to AussieNeil]

isn’t that the Evusheld shots??

Sorry, my mind is tweaking?

[Tapps in reply to AussieNeil]

thank you for getting back to me so quickly. This is unnerving. Along with the full body rash.

I’ll see if I can get the labs, should be able to get a screen shot.

[Tapps in reply to Tapps]

Immunglobutin: G. 399 s/b. 610-1,616

A, 25, s/b 84-499

M, 11, s/b 35-242

[AussieNeil Partner Administrator in reply to Tapps]

I take it you are only having occasional IVIG infusions? IgG of 399 is borderline acceptable.

My IgA has been as low as a quarter yours and coincided with skin infections. My IgM is half yours and has been lower. IVIG won't improve them, sadly, though IgA infusions may one day be possible.

[Tapps in reply to AussieNeil]

I’m not having IVIG shots, I meant to ask someone about their shots.

[Tapps in reply to Tapps]

Did you have major skin issues?

I have a full body red itching rash!

Doctor in Florida said it was a bit of a mystery????

[AussieNeil Partner Administrator in reply to Tapps]

3 months ago, you talked about having "IgHv infusion on Monday". healthunlocked.com/cllsuppo... I assumed that with your low IgG, that this was an IVIG infusion. What actually happened and have you had any since? This is important, because, while it's uncommon, you can get full body rashes from IVIG, which can occur1 to 4 weeks after your infusion. Switching IgG providers can resolve the rash.

Per: dermnetnz.org/topics/intrav...

What are the adverse reactions on the skin?

Skin reactions to IVIG are uncommon, and the exact incidence is unknown. Of all the reported rashes, a blistering type of eczema is the most common (a type of dermatitis) [2]. It often begins at about 8 to 10 days after exposure to IVIG. The rash characteristically starts as dyshidrotic eczema (pompholyx) with small itchy blisters on the palms, but this may be followed by a more generalised eczematous eruption that spreads throughout the body. The affected individual may become erythrodermic (red all over) and pruritic (itchy).

The skin lesions often resolve within a period of 1 to 4 weeks. The use of topical steroids or systemic steroids controls symptoms and may speed recovery.

Other skin reactions include:

Urticaria

Maculopapular rash (a typical morbilliform drug eruption)

Lichenoid eruption (like lichen planus)

Diffuse hair loss

Cutaneous vasculitis.

What causes the skin reaction to IVIG?

The exact cause of skin reactions to IVIG is unknown. It is thought that the body's immune system reacts to one or several substances within IVIG, such as a stabilising agent, a part of the immunoglobulin, or T cells. The reaction may differ depending on the batch and type of IVIG as the immunoglobulin is obtained from a different pool of individuals.

What happens upon re-exposure to IVIG?

When an individual develops a skin reaction to IVIG, a second exposure may cause the rash to appear earlier (generally around 8–10 days after infusion) and become more extensive. The immune system has developed memory T cells, and subsequent responses are faster and more severe. Switching the type of IVIG may cause a less severe reaction.

I've never had full body rash in my 14 years of having CLL.

Neil

[Tapps in reply to AussieNeil]

Looking back on my calendar,

Yes, says infusion August 15, 2022

Evusheld April & November 2022

September 09, 2022 New Covid Shot

October 2022 Flu shot

[Tapps in reply to Tapps]

infusion September 12, 2022

[Tapps in reply to Tapps]

Rash started about, October 21, 2022

[Tapps in reply to Tapps]

There were two infusions on the calendar. 2022

August & September 2022

Rash: starting with itchy arms,

The end of October 2022.

November 2022. it was a full body rash.

December: it’s worse

See the Hematologist tomorrow

[Tapps in reply to Tapps]

If I sound totally goofy: it’s because I’m speaking in place of my husband, he doesn’t do internet, or any social media. He has a flip phone. Doing the best I can to interpret his situation

Thank for your help, this information seems to tell me it’s not the Ibrutinib,

it probably started with a reaction to the Infusion

Although, the rash has been over a month

Take care, Barbara & Gary

[AussieNeil Partner Administrator in reply to Tapps]

Thanks for explaining. I was wondering what was happening.

You aren't alone in this kind of situation. It would help people replying to your posts to understand your situation if you updated your (well your husband's) profile to note this. You can edit it via this link: healthunlocked.com/profile/...

Neil

[AussieNeil Partner Administrator in reply to Tapps]

You asked about combining the IVIG with your vaccinations on 4th September. I presume you had your first IVIG infusion on Monday August 15th and were wondering about the timing of your next one. Usually they are given monthly. If you didn't have one in the month before your rash appeared, it's unlikely your IVIG infusion(s) caused your rash. If you have another within a month of your next IVIG infusion, that may be the cause of your rash. I hope you find something to give you relief from any itching.

Neil

[wmay13241 in reply to AussieNeil]

Following a 2016 CAR-T infusion, my wife's IgA and IgM levels are so low that the lab results say they are not measurable. When her IgG falls below 400, she gets a Gamunex-C IVIG infusion (takes about 5 hours). Since the IgG half-life is about 3 weeks, she usually gets an IVIG infusion every 2-3 months. She has not had any reaction or side effects to Gamunex-C, and so far very few infections.

[Tapps]

I must have missed spoke about the IVIG.

I may have just been confused and asking about someone else’s Shots??!!??

[Tapps]

We were in Florida for two months, Have a Hematologist there, he stopped the Ibrutinib, on 12/06/22. Now we are back home Northwest.

He wasn’t sure if the Full Body Rash was caused by Ibrutinib????!!!

See my Primary Hematologist in the morning.

Thank you for always being there. And there are so many of us. Sometimes life gets really scary. THX

[Tapps]

Full Body Rash: Saw the primary Hematologist,

Went this morning: Doctor took one look, and said “ OMG” have never seen anything like that!

Took several pictures, said, will talk to someone at the University of Washington.

The Hematologist in Florida said: “Never have seen anything like this”. This is Mysterious!

See another Dermatologist on Thursday??

In the mean time the whole body, hurts and itches

Later 🥲

[Tapps in reply to Tapps]

Last week, 12/15/2022, appt. With new Dermatologist, she said “we’ve got a plan! “

Two injections of “Dupixent,” and RX of Clobetasol, Propionate solution 0.05% mixed with OTC sensitive skin 16 oz jar of thick body cream ( always ask your Doctor)

Apply twice a day, Also take an antihistamine tablet ( always ask your Doctor! )

Once a day take a warm Oatmeal tub bath: evening!

( I purchased the kind of Oatmeal packets from drugstore). NOT-HOT WATER : pat dry,

apply Mixture of the thick body cream!

use medical gloves

On the second day the full body red rash has turned “pink” one week later, mostly clear, except chest area still has some red spots

It’s working, husband says most of the itching is gone. I’m going in next week to learn how to give my husband the “Dupixent” shots Use until rash is completely gone: We have a plan

Always ask your Doctor? Different for everyone!

[SERVrider]

FWIW, I have been on replacement IgG (subcutaneously) for 5 years and was diagnosed with CLL 3 years ago. More recently I had two administrations of IVIG because I was having bowel surgery so couldn't use my abdominal fat to infuse the SC version. I have had no skin problems with either though I did develop actinic keratoses on both forearms earlier in the year and had to use pretty strong steroid cream on them. As an aside, my weekly dose of SCIG is 80ml (over 4 infusion sites) whereas the IVIG was 600ml which is around 12-15% of my total blood volume. That's why it takes 3 or 4 hours to do. I have had some basal cell carcinomas and a naevus which have been excised and the dermatologist checks me over every 6 months now.

[Wranglerls]

Yes I am very low too and start infusions of this tomorrow. I have s c l that has just been found. It helps fight infection and without adequate levels you are vulnerable. Wranglerls

[Jungle-Jim]

My IgG has consistently been around 350... and like so many others, I was quite concerned. But my ONC made it absolutely clear that she will not "treat based on numbers" (not even as a prophylactic). She feels that as long as I was not dealing with any chronic conditions (especially ones that were not improved by antibiotics), I should not be overly concerned. Even so, I have to be proactive in exercising due caution in everything I do. Her response falls in line with numerous comments cited by Neil and others on this Web site.

I know we're all different, and that some, whose IgG is much higher than mine, suffer with chronic illnesses. And, I'm sure that, while the serums used for IVIG infusion are extremely scarce, there may be doctors who are less hesitant to prescribe them. But there are side effects associated with IVIG/IVSC, and hopefully your doctor can help you safely navigate this labyrinth, while you stay focused on enjoying yet another day on the planet.