I am assuming that anyone who has not had chicken pox should get the shingles vaccine with its painful side effects. I read in several places on google : What causes shingles? Shingles is caused when the chickenpox virus is reactivated. After a person has had chickenpox, the virus lies dormant in certain nerves for many years.
Who gets Shingles.: I am assuming that anyone... - CLL Support
Who gets Shingles.
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onu1tadi2
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Anyone who has *had* chickenpox should certainly get the vaccine. They actually suggest that everyone get the shingles vaccine in case they don’t remember getting it or were exposed without their knowledge. Having had shingles I can tell you it’s better to avoid it if you can.
It depends on if you are the type who gets various illnesses when others are getting them or not. I was usually one of the one or two kids in class when the rest of the class was home in bed from something going around. Never had flu shots. And only had flu once I think in 75 years. The reason for avoiding these illnesses, including Covid (am unvaxxed) is mainly sticking to well aired places and not standing close to people when conversing. Also i do not spend time in room with a sick person for long. Last week i went to an event with 1000 people, very crowded. Milled around, ate etc. for hours, but talked to people at length outside the building. So far not infected. But if I was taking subway to work, I would get vaxxed.
While having a better immunity than others in your class and taking measures to reduce the viral load has worked well for you, keep in mind that:-
1) Your immunity is not only lower now because you are older, CLL also compromises your immune system
2) With COVID, while fair percentage of those infected don't have symptoms, they can still spread the virus by breathing and talking near you.
That's where mask wearing and vaccination become important.
Neil
Layered defence improves protection, even with growing holes in the protective layers
While I appreciate your fair and reasonable warning, i simply keep a distance from people when i talk to them, wash hands after touching doors and handrails. I keep my apartment well aerated when anyone visits. So i will not risk getting caught up by getting a dozen or even 2 vaccines. I have some faith in my instincts. My greatest fear is getting infected if i go to the dentist or am admitted to a hospital. I almost never visit people; I socialize mainly virtually. I am concerned about travelling to northern Europe on business though and will thoroughly research things first. I will wear a mask in airport line-ups and choose a seat carefully. I did just spend 5 hours in a crowded place a week ago at a reunion of 800 people, almost all unmasked, talking unmasked to many people, but usually briefly except for outdoors. So far so good. My main fear of vaccines is getting Afib which i get when stressed physically or mentally. I have not been sick since my CLL became active 5 years ago. My main symptom is bouts of fatigue. Before Covid I worked at a demanding job 3 days a week in close contact with people (new arrivals from developing countries) a third of the time. I have been fortunate. I am not sure if i am doing the right thing but have survived without vaccines since childhood when I had the main ones at school. As for shingles, none of the over sixties people I know have had it to my knowledge including family members. So I do not believe the 2 out of 3 statistic I found through Google. I do know that quite a few have had cancer and heart disease. Vaccines protect in some ways but too many might also lower one's immune system in other ways as the vaccines are mostly new and not well enough researched. Statistics are not carefully enough compiled or understood I feel.
1) With respect to Afib, just ensure that your risk from the actual disease isn't much higher than from a vaccination. Per Atrial fibrillation after vaccination for COVID-19: analysis of the vaccine adverse event reporting system ncbi.nlm.nih.gov/pmc/articl...
A total of 2611 events of AF were reported after COVID-19 vaccination, of which, 315 were new-onset AF. As of January 7, 2022, a total of 523.12 million COVID-19 vaccine doses were administered, making the incidence of atrial fibrillation around 5 per million COVID-19 vaccine doses administered.
Our study has limitations. Firstly, the VAERS database does not report the total doses of vaccine administered for each adverse event reported; hence, presentation of the results as adverse events per doses administered in subcategories was not possible. Furthermore, there remains the possibility of overreporting or underreporting of atrial fibrillation among individuals receiving COVID-19 and influenza vaccines, considering VAERS is a passive reporting system. Information on prior COVID-19 infection and conventional risk factors for AF are unavailable in the VAERS database.
Versus, from July this year:-
COVID-19 increases the risk for the onset of atrial fibrillation in hospitalized patients
nature.com/articles/s41598-...
After adjusting for demographics and comorbidities, COVID-19 positive patients had 1.19 times the odds (95% CI 1.00, 1.41) of developing AF compared to COVID-19 negative patients and 1.57 times the odds (95% CI 1.23, 2.00) of developing AF compared to pre-pandemic patients. Our study demonstrated an increased risk for AF, directing the attention for improved screening and treatment regimens for the sequelae of COVID-19. While COVID-19 continues to affect many people around the world, AF may be a significant cause for morbidity and mortality. Adequate detection and treatment of AF is essential to reduce the burden of disease.
So do what you can to keep out of hospital with COVID-19 infection!
With respect to (2), in my family, my father and his sister both had painful shingles infections. His other two brothers didn't have shingles that I know of. On my mother's side, I don't recall her sister having shingles, nor did my mother. My mother's brother sadly died young of lung cancer - he was a heavy smoker. So 2/6 which coincidentally? matches the 1 out of 3 CDC statistics.
Neil
Hello onu1tadi2
It is a personal decision. I have never had chicken pox, but occasionally get cold sore in one place on upper lip about once or twice every year since I turned about 42 yrs. old. Abreva if applied early enough will stop cold sore before it even blisters on me in day or so. It is my understanding that cold sore is a form of herpes similar to shingles. I am 75 years old and never had chicken pox, I missed most of the childhood illness. My doctor thought 10 years ago that I might have 1/8" x 3/4" spot of shingles in left shoulder blade. Don't remember if or how it was treated but cleared in few days. For this reason, I see little value in getting shingles shot.
The two viruses are very similar, and occasionally the simplex (cold sore) one can pop out on other body areas, including intact skin. I had one infection my doc classified as a mixed simplex/zoster on my left upper back/shoulder area. Very unusual for simplex to infiltrate thicker areas of skin, it prefers thinner tissues adjacent to mucosal ones if not in the mucosa itself. So lips, nose and genitals as opposed to our backs or shoulders.
They say that you cannot catch shingles from someone else but I had mine just after a worker I eat lunch with had shingles. I can’t believe that was just a coincidence.
Who told you that? The virus is definately contagious, and can *lead* to someone developing shingles. But a shingles lesion itself won't turn into a shingles lesion. The person exposed to the herpes simplex virus, and has never had chickenpox or a chickenpox vaccine, can then develop shingles.
medicinenet.com/is_herpes_z...
Per the article:-
People who have had chickenpox in the past are at a higher risk of getting shingles. Once you recover from chickenpox, the virus may remain inactive in your body and become active years later in the form of shingles.
The CDC section on Shingles (Herpes Zoster) - Transmission
cdc.gov/shingles/about/tran... Spells out the process best. With my emphasis:-
If you have shingles, direct contact with the fluid from your rash blisters can spread VZV to people who have never had chickenpox or never received the chickenpox vaccine. If they get infected, they will develop chickenpox, not shingles. They could then develop shingles later in life.
The risk of spreading VZV to others is low if you cover the shingles rash. People with shingles cannot spread the virus before their rash blisters appear or after the rash crusts.
People with chickenpox are more likely to spread VZV than people with shingles.
bhayes84 it could be that exposure to shingles reactivated your herpes zoster from a previous chickenpox illness. Nearly everyone caught chickenpox before vaccinations were given, it was so contagious. Reactivation occurs in about 15–30 per cent of infected persons during their lifetime who don't have compromised immune systems. The incubation period is 2–3 weeks and is usually 14–16 days.
Neil
My my doctor had told me "not contagious".
From the Mayo clinic site:
mayoclinic.org/diseases-con...
"A person with shingles can pass the varicella-zoster virus to anyone who isn't immune to chickenpox. This usually occurs through direct contact with the open sores of the shingles rash. Once infected, though, the person will develop chickenpox rather than shingles."
From NIH.gov
"Generally shingles is not contagious, but a person with active shingles can spread the virus when the rash is in the blister phase. It's important to keep the rash covered."
I had chickenpox as a kid but don't believe I touched the co-worker who had shingles (I didn't know he had it until later).
AussieNeilPartnerAdministrator
I suspect this recent post prompted your post: healthunlocked.com/cllsuppo...
However, please calculate the odds and work out whether you'd rather a few days of possible pain or risk around at least a 20% risk of several weeks of shingles pain (this is for folks who are not immune compromised), then at least a 10% chance of postherpetic neuralgia (PHN). The incidence of both increases with age (see plot below).
I'm approaching my 100th day of shingles/PHN and I would willingly trade that for just a month of pain. Shingles damages your nerves and if your nerves don't recover, then you can have PHN for the rest of your life. While your nerves are repairing, you can get numbness, a dull ache (this is the best of it), random burning and stabbing sensations. At times you can't have anything touching your PHN affected areas or you risk extreme pain. And that's with 'pain management'. Managing this pain is complicated; we don't have much in the way of effective nerve pain drugs and it's trial and error trying to find something that works. A complication of getting older, is that kidney clearance of the treatment drugs limits the maximum dose you can take of pain medications without damaging your liver and kidneys.
The only reason I haven't been to Emergency (several times) is because I'm likely to face a long wait given my pain is not life threatening and I don't want to catch COVID.
Per the CDC (and other health authorities report similar):-
Almost 1 out of 3 people in the United States will develop shingles in their lifetime. Most people who get shingles will have it only once. However, you can get the disease more than once.
Your risk of getting shingles increases as you get older. The most common complication of shingles is postherpetic neuralgia (PHN), which is severe pain in the areas where the shingles rash occurred. About 10 to 18% of people who get shingles will experience PHN. The risk of PHN also increases with age.
Hospitalizations and Deaths (my emphasis)
Approximately 1 to 4% of people who get shingles are hospitalized for complications. Older adults and people with weakened or suppressed immune system are more likely to be hospitalized. About 30% of people hospitalized for shingles have a weakened or suppressed immune system. Shingles causes fewer than 100 deaths annually. Almost all shingles deaths are in elderly or people with compromised immune system.
The Shingrix vaccine is available in Australia, but post treatment, I don't have much in the way of B cells to produce antibodies.
Neil
How the risk of shingles and even worse, post herpetic neuralgia, increases with age - CDC
I'm so sorry you are going through all that. And yet you still give so much of your time and effort to helping us all with your research on our behalf and your replies. I have asked re getting the vaccine and been advised to wait until I finish my 6 months Rituximab next month as it may work more effectively then. Same with a repeat pneumonia vaccine shot. I do hope you begin to recover and get less pain soon. Very best wishes. Gillian
Thanks. Unfortunately, you'll need to wait for around a year after your last infusion before you are likely to produce antibodies from a vaccination 
Thanks as ever for the good advice. Looks like I'll be shielding for the forseeable anyway. Had the flu vaccine and 6th Covid shot recently but both whilst on Rituximab. And Covid cases are on the rise again here in the UK. Will discuss the other vaccinations next year 🤔
Hi. Goodness don’t get me started on shingles ! My husband had them almost a year ago now and is still suffering with PHN. He can no longer drive because putting his seatbelt on across the affected area is so painful. The shingles have caused him so much more grief than his CLL. I’m beginning to despair that he will never recover. Shingles not the CLL have impacted on our life so much. Lesley
I’ve had Shingles 3 times starting at 35 years old. The worst pain I have ever had. It felt like millions of needles on the top of my skin. Wearing clothes was difficult. The moment I could get the Shingrix vaccine I certainly did. You don’t understand if you haven’t dealt with the pain. Hope your husband is able to get some relief. Sally
Obviously a personal decision but I decided to have the shingrix vaccine when it became freely available in the UK in 2021. I had absolutely no side effects and am very glad I had it. Keith
I have had it three times - all in the same place, the lower cheek on the righthand side of my face. I used hydrocolloid dressings on it every time, and it worked well at stopping me scratching it, and at keeping the gunk from the blisters escaping. My Gp knew and was fine with that. However, this was about 10 years pre-diagnosis with CLL
Liz in UK
> get the shingles vaccine with its painful side effects
I had two shingles shots. Did not have any side effects.
we have a husband and wife employed at my company. He developed Shingles and was miserable. About a week after he broke out, his wife (who had never had Chicken Pox) came in my office to show me little blisters all over her body. I couldn’t believe that she could be breaking out with CP so I googled it. I had no idea that someone could catch CP from someone with Shingles but saw it with my own eyes. As with most people in my generation, I had it as a child and also had the shots. They made me feel miserable for about 24 hours but from what I hear, not as miserable as having Shingles.
This is how Shingles is contagious; not as a direct Shingles to Shingles infection, but as Shingles virus is transmitted causing Chicken Pox, which can then cause Shingles down the road. It's not common, but it does happen. So there is confusion when people say "shingles isn't contagious". I imagine if they shared the same bed, and his breaking Shingles blisters got onto the sheets/pillows, and she got contact with that liquid from the lesions, is how she got it. That would be the most common possibility IMO. Those of us who get cold sores know that if a single vesicle breaks open and starts to drip down our face, the places that the liquid touches also starts to break out. The same with Shingles, keeping those lesions covered and changing clothing/bandages frequently is very helpful preventing the spread. It's only the liquid inside the lesions that is contagious. Pre-lesion, and scabbed over lesions, don't transmit virus.
I had a 10 month battle with shingles from June 2021 to April 2022 and I still have nerve pain in my leg every day which may or may not be related. I had back pain and I got extreme fatigue and felt like I was dying. I had to start sleep meds after trying every natural option possible and had to start BP pills because my pressure was going up from the pain. I got the shots for shingrix as soon as I was allowed and there were no side effects. I would not wish what I went thru on my worst enemy. I truly encourage you to try shingrix as it is said to be 90 % effective. I should have gotten it but was trying to avoid covid by not going to hospitals and clinics more than I had to for other conditions. I had been given the prescription in March of 2020. I had 3 good friends who had not gotten shingrix when I was at my worst and they boodled it to their doctors to get it when they saw what I went through. They too had no side effects.
I respect people’s choices I just want you to have a perspective from someone who went thru hell with shingles.
Post herpetic neuralgia is a very real thing that can happen with shingles. My neighbor with CLL still has it and it's been almost a year since his shingles. I don't have post herpetic neuralgia, even after several rounds of shingles. My CLL variant/markers are "worse" than his, so our markers likely have very little to do with whether or not we get this effect, it's a crapshoot. I do take antivirals, though, and he only took them minimally while I take mine until the lesions are 100% gone and then for at least another week to boot.
Gabapentin helps a number of people with post herpetic neuralgia, if you think you are still having problems from it, have you tried that? It's not a "standard pain" medicine, it works on the nerve itself and is helpful for a number of pain states caused by nerve inflammation.
I had the shingles vaccine and had no adverse reaction.
So much debate over a very simple decision.
You won’t find a GP or Internist in the USA who is debating a Shingles vaccination for adults over 50 or with an immune disorder. Shingles can be severely debilitating and cause some very serious permanent injuries.
The second generation vaccine is Shingrex and since its not a live vaccine- people with CLL and other immune disorders can get it with no risk of causing it.
Debating a shingles vaccination is like debating whether its risky to use cortisone for itchy skin. Or fungus killer for athletes foot fungus. It’s a headshaker.
I've had the two Shingrix vaccines, the shingles vaccine we can have. No side effects, painful or otherwise.
That is good to know. You are lucky. There are so many individual differences.
I am 67 years old and not eligible for Shingrix here in UK, I did ask my GP and Haem team but answer was no (it was enough of a battle to get extra pneumonia shots!). So I bit the bullet and went private for this vaccine, I do not regret a penny of the £500 it cost me after reading this debate. So sorry to hear so many people are suffering from shingles on top of everything else we have to deal with. And as always thank you for your rational informed debates.
People who have had chicken pox are the ones who may get shingles. The chicken pox virus lays dormant in our bodies after ee have contracted chicken pox.
I have had shingles 3 times in the last 7 years. Each attack in a different place. CLL the gift that keeps on giving
I had Shingles about 3 years ago, about 6 months before starting the ramp-up for Venetclox. It was during the 4th week of the ramp-up I was asked to participate in a study on the effectiveness of the Shingrex Vaccine in the CLL population. The only side effect was spiking a fever for a couple of days and throwing off the labs for week 5, but not a big problem. I was glad to be a part of the study. I hope to never have Shingles again.
It may be tricky to know whether you have had chicken pox or not (I only got a couple of spots as a child)
For all the rest have a look at the following post which links to others on the subject:
healthunlocked.com/cllsuppo...
Best wishes,
Ernest
I had chicken pox when I was in high school....it was not fun.
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