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Living a normal life expectancy with a CLL compromised immune system - the importance of Post-Exposure Prophylaxis (PEP)

AussieNeil profile image
AussieNeilPartnerAdministrator
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With the success of targeted therapies for treating CLL, repairing our compromised immune systems is now considered one of the major remaining challenges in managing CLL so that we can live out a normal life expectancy. Even though we don't respond that well to vaccinations, CLL specialists recommend having those that are non-live, as they can reduce our risk of serious infection and death. healthunlocked.com/cllsuppo... Live vaccinations are not recommended, because there's a risk we can become seriously ill if our immune system isn't up to destroying the weakened (attenuated) pathogen.

So how can we be protected from serious illnesses to which we are vulnerable after we have been exposed?

This is where Post-Exposure Prophylaxis (PEP) may save our life. Depending on where we live, a range of PEP responses may be available. These can be for example an antiviral (e.g. for COVID, flu, HIV), or an immunoglobulin (e.g. for measles, hepatitis, rubella, cytomegalovirus (CMV), herpes zoster (shingles)). So if you learn you've been exposed to a serious bug, immediately contact your doctor or specialist to ask if PEP is recommended. You may also find some useful on-line guidance information with a search query '(contagious disease exposed to) pep guidelines (country), e.g. "flu pep guidelines uk".

Public vaccination programs may be a victim of their own success, which has implications for those with compromised immune systems who rely on a very low risk of community contagion to be able to mix with others. Most of us are old enough to remember the right of passage to adulthood of suffering through the childhood illnesses of measles, mumps, chickenpox, rubella, etc. Those who grew up protected from the scourge of these infections thanks to the success of public vaccination programs, are now questioning the value of vaccinations. They didn't experience being seriously ill for a week or so and question whether feeling off for perhaps a day or so from a vaccination or booster is worthwhile. So with what were common childhood illnesses now rare, coupled with falling vaccination rates, the amount of protective antibodies from donated plasma and blood is falling. That might be self-correcting, as what were forgotten childhood illnesses become more prevalent. The more contagious a disease, the higher the percentage of the community needing immunity to prevent the disease spreading - so called herd immunity.

Immunoglobulin PEP can be given as an intramuscular injection or an IV or subcutaneous infusion. Antibody titres (the amount of IgG specific to measles, etc., in immunoglobulin products) are assessed occasionally to ensure that protective doses continue to be administered in line with changing blood donor immunoglobulin titres. So if you are already receiving IVIG or subcutaneous IgG, you'll probably have enough protection, but do confirm this with your specialist. (For those wondering about PEP for pregnant women or infants too young for the MMR vaccination, my on-line search for "measles PEP infants uk" returns england.nhs.uk/long-read/me... "For pregnant contacts, immunoglobulin is mainstay management for PEP For infants below 6 months immunoglobulin is mainstay treatment; For infants aged between 6-8 months, MMR vaccine can be offered if exposure occurred outside household setting AND ideally should be given within 72 hours")

This post was inspired because of concern at recent measles outbreaks, which resulted in several posts, such as the following:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

With two recent deaths from measles in West Texas, it's possible that the number infected is much higher than reported, given the known death rate from measles. Thankfully unless you live where there's a measles outbreak, your risk of infection is still considered very low, though that will also be influenced by how and where you mix with others, e.g. travel, schools. medical establishments.

Further References:

It's time to start talking about ways to enhance survivorship for those with CLL

"While progressive CLL or treatment-related complications were previously the predominant cause of death, most patients diagnosed in the current era will die from non–CLL-related causes, including second cancers, vascular disease, and infection".

healthunlocked.com/cllsuppo...

Immune Dysfunction and Consequences in Chronic Lymphocytic Leukemia

jnccn.org/view/journals/jnc...

What is Herd Immunity?

publichealth.columbia.edu/n...

Herd immunity describes a situation in which a large part of a population is immune to a particular disease due to vaccination or previously contracting the illness and developing anti-bodies. This indirectly also helps ensure the protection of the remaining population, and offers a higher chance of combating and reducing transmission.

In many cases, herd immunity ensures that while not everyone is immune to the disease, everyone can enjoy protection from it. The higher the number of immune people in a population results in a lower risk of contracting the disease or virus for everyone.

:

Herd Immunity Examples and Thresholds

A large percentage of the population must be immune to the virus in some way in order to reach herd immunity.

This threshold will vary depending on the disease(link is external and opens in a new window)—measles herd immunity requires 95% of the population to be immune, while polio requires 80%.

Do Australian immunoglobulin products meet international measles antibody titer standards?

pmc.ncbi.nlm.nih.gov/articl...

The indications and safety of polyvalent immunoglobulin for post-exposure prophylaxis of hepatitis A, rubella and measles

pmc.ncbi.nlm.nih.gov/articl...

Derived from pooled blood donations, polyvalent immunoglobulins are used for post-exposure prophylaxis as one aspect of the public health management of hepatitis A, rubella and measles. This review summarizes the safety profile of these blood products and the current recommendations for their use for the prevention of hepatitis A, rubella and measles among people who have been exposed to these diseases. The current recommendations are drawn from the most recent publicly available national guidelines of the United States, Australia, New Zealand, Canada and the United Kingdom as accessed in February 2019.

Immunoglobulins - Australian Red Cross Lifeblood

lifeblood.com.au/health-pro...

With a CLL diagnosis, knowing more about your immune system could save your life!

healthunlocked.com/cllsuppo...

If you have previously been informed that you among the 10% allergic to penicillin, please confirm that's indeed the case. Your life may depend on it.

healthunlocked.com/cllsuppo...

Note: this is an unlocked post so anyone, even those outside our community, can read it. If you want to ask a question related to your own situation, it's advisable to start your own locked post. There's more information about locked and unlocked posts here: healthunlocked.com/cllsuppo....

Neil

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CLLerinOz profile image
CLLerinOzAdministrator

Thanks for this very timely post, Neil. I've added a link to the section about prophylactic treatment in our pinned vaccinations post: healthunlocked.com/cllsuppo...

CLLerinOz

beanlake14 profile image
beanlake14

As always, thank you thank you.

BigDee profile image
BigDee

Hello AussieNeil

Just the timely article we CLLers needed. 👍

Adinajr profile image
Adinajr

Wow, you are awesome. Thank you so much.

Maya2007 profile image
Maya2007

Thanks for drawing attention to this very important topic.

unairdefamille profile image
unairdefamille

Many thanks, AussieNeil for posting important information.

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