Hi folks
This is a brilliant site has keep me steady since my husband’s diagnosis of SLL now CLL.
My Husband had been W&W for 6 years, now on acalabrutinib for two years with no side affect and doing well. He has been offered the shingles vaccine but he hasn’t had chickenpox’s, is it safe to get the vaccine.
Hi, this recent discussion covering the same question might assist you;
healthunlocked.com/cllsuppo...
Yes it’s certainly advisable for your husband to have the non live Shingrix version of the shingles vaccine. Is he absolutely sure he’s never had chicken pox?
Regards,
Newdawn
It's safe but don't think necessary. If he didn't have chicken pox, you don't get shingles according to doctors. Best to double check with his doctor. I didn't get the shot. I personally am tired of shots & my CLL expert said there was a study done & it wasn't as effective as they hoped. I don't have the stats for that study. People report very bad few days after the shot & I just don't want it. Most of my docs don't really push it on me. Hopefully I won't ever have to deal with shingles. I wish I was born years later ...children approx 30 years & younger got the vaccination & will never have to worry about shingles. I was stressing all those years I took care of my grandkids & my daughter just told me that I worried for nothing...her children were vaccinated for chicken pox & would never get it. Gosh, wish I brought that up sooner to her. But I should have known....all 4 never got the pox. They are all in college now! 🤪
I had the first shingrix vaccine two weeks ago without a single symptom apart from the usual mild soreness at the site. I’m hoping the 2nd vaccination doesn’t cause any issues.
Whilst it cannot guarantee total protection against contracting shingles, I had it to minimise the possible serious consequences (post hepatic pain) that shingles can cause. It’s a matter of personal choice however and I understand ‘vaccination fatigue’.
Newdawn
This is something I'd recommend discussing with your specialist. Chickenpox was pretty ubiquitous prior to vaccinations - one of the childhood viral infections pretty well everyone went through, so I'd suggest it's possible, but unlikely to have avoided infection. Unfortunately, according to the Australian immunisation handbook;
immunisationhandbook.health...
Serological testing for immunity to varicella is not recommended before or after receiving varicella-containing vaccine
Serological testing to check immunity before or after varicella vaccination is not recommended. This is because immunity following vaccination is often not detectable using currently available blood tests.
- Older adolescents and adults
Serological testing before varicella vaccination may be helpful in older adolescents and adults who have:
- a history of no previous varicella infection
- no documentation of age-appropriate varicella vaccination
Most people with a history of no varicella infection are immune, and may not need vaccination.14,15
When interpreting serological testing results, it may be useful to discuss the results with the laboratory that performed the test, to ensure that decisions are based on all relevant clinical information.
So unfortunately testing for having previously had chickenpox isn't sufficiently reliable. The challenge is that you are at increased risk of shingles if you have CLL and have had chickenpox. Believe me, doing whatever you can is well worth it to avoid ever getting postherpetic neuralgia or even worse postherpetic neuropathy. That's why I recommend asking your CLL specialist.
Neil
Thanks
I have never heard of an adult getting chicken pox. It's a childhood disease. Right? I was a teacher...we never had to worry about that.
Given you were a teacher, I suspect that somewhere along the way you developed immunity to the common childhood diseases, including chickenpox, which is only a 'childhood disease' because it is so very infectious, so most of us get it before we get to adulthood. I know someone who ended up with chickenpox on his honeymoon and spent most of his honeymoon in a bath to try and ease the itching!
Oh gosh on his honeymoon!
I got chicken pox couple of months after my 3rd child, I caught it off my oldest. My husband said I'm glad you don't have acne like that... I was covered 🤣So yes adults can still get chicken pox unfortunately.
My son had chicken pox, with nearly other child in the area, when he was two. My four year old daughter did not catch it. She got chicken pox in her thirties. It is generally very infectious so easily caught as a child and, like many of these things, apparently more serious as an adult. I understand that I had it at eighteen months - happily I don't remember! I have now had both shingrex jabs.
I too was a teacher but I knew several adults who contracted chicken pox... Also when I was diagnosed with CLL the consultant told me it would be when I got shingles not if! That was in the days before singrex was available in the UK on the NHS so the live vaccine wasn't available for me! As soon as shingrex was available here I did get vaccinated.. I certainly want to avoid shingles if I can
Take a measured balanced view... in the UK over 90% will have chicken pox antibodies proving past exposure (infection). In the young, chicken pox illness can amount to just 3 spots, or indeed no spots. Asymptomatic illness occurs all the time, we just don't know it. The wonders of our immune system...
I have a very smart wife, I asked her if she'd had chicken pox, yes she has, when... she knows not? She can't remember! I had chicken pox aged 14. Quite old really. Remember it well. Horrible it was.
Don't rely on ones memory.
Does it matter?
Yes it definitely does matter... why else would our Gov invest so much in a vaccine? To reduce the cost of shingles care!!! Shingles matters.
Last night I have just had my first night sleep for a week. I am mid shingles right now. Left sided, C2 scalp. I have had one of the worst weeks of my life, worse than chemo, new knee.... I have never had unrelenting pain like it. Fever, loss of appetite, fatigue too. No sleep for 6 days. I am better today, rash is crusted, no pain.
Make if this what you will. Shingles is a very important condition. Caught me by surprise. Praying I won't get PHN.
Incidentally my wife made the diagnosis, I had left over Acyclovir from FCR prophylactic days, read the shingles dose and started immediately. After only 36hrs the rash stopped spreading .
Jig
PS No, I've not had Shingrix. Yet. I will. My plans have been thwarted by a long respiratory illness this year, then Flu and Covid vaccinations times etc. And vaccinations seem to make me so ill so I ensure they don't interrupt my socal life. Consequently have been able to fit it in. Hey ho!
PPS I am still planning to have Shingrix. Shingles can revisit.
Thanks for sharing this, Jig.
Hope you continue to improve 🙏🏻, and that PHN doesn't set in...
Paula
P.S. What dose of Acyclovir are you taking? When I asked my haematologist, he said it would be 800 mg X 5 daily for at least 7 days. But other sources seem to say less.
I never actually had shingles, but I was so horrified by other people's experiences of it, that I wanted to be prepared.
Thanks Paula.
800mg 5x per day, for as long as blisters take to crust, plus 2 more days!
It's in the medication box on drug details leaflet too. 😄 and online.
Where does it say otherwise??
Went for a walk today, around our village. Bumped into a friend, aged 79. He asked me why I'd got into wearing a hoodie, with the hood up, like a teenager. I told him more comfortable than my normal beanie cap cos of scalp shingles. (I saw him just a week ago, the day it all started)
He expressed his surprise, and sympathy, " I hear shingles can irritate," he said.
Whoa!!! I put him right, but can't type here what I actually said in reply, on the Forum. 🤯
No, he'd not had shingles, nor the vaccine.
There are many out there ill-informed about shingles. I am certain many cases start treatment too late.
I know a lot about shingles, and I am astonished how difficult it was to get mine diagnosed. Not helped by the fact its on the back of my head, and pain severe. Excruciating spasms every 10 seconds, for hours at a time. And, it was the 3rd Dr I saw about his episode that confirmed it. My wife had been looking at it, luckily I had Aciclovir, and cld start promptly. Hours count.
Worth remembering Shingles can affect all nerves in the head and neck, including the Cranial Nerves. So... it can start in mouth! Prodromal symptoms will alert.
Elsewhere on the body ususlly less intense, head and neck ... sensitive areas.
We all have individual responses to pain.
I have a high pain tolerance. My shingles pain was intolerable for 3 days. Then it ceased.
Jig
It all sounds absolutely ghastly Jig and something we all live in fear of. Hope you’re feeling so much better very soon with no long lasting effects.
Telling someone you’d heard ‘shingles can irritate’ is a bit like saying being hit by a car can dent you a bit 🙄 People are well meaning but often clueless.
Newdawn
Thanks Newdawn. Already on the mend.
Yeh I agree. TBH, this individual, to whom I gave a rather agricultural reply, is well known to me! Not my normal pavement vernacular! 😄
We are still friends.
So very sorry you have shingles.. Its such a nasty disease.. Here's wishing you a swift recovery or at least a night's sleep soon
I had both Shingrix shots two years ago without any side effects whatsoever. Very glad I had it. I always have the recommended vaccinations as my consultant at the Marsden feels that the vaccinations are far better than getting whatever they are protecting you from ! Best to discuss with your consultant. Good luck
Such a good question. I had Chickenpox as a child but when my primary care physician ran some tests last year (a year post-O+V treatment), I had no Chickenpox (or Rubella) titers. She was unsure whether it was advisable to get the Shingles vaccine or not. She didn’t think there was any harm in doing so, but I have not gotten it yet.
I had mine a few months ago I’d just finished chemotherapy and still on Ventoclax and I was fine apart from a sore arm hope this helps Julie
Are all CLLers eligible for the Shingriz vacc now? My GP practice seems to think they only have to do the vaccines by age entitlement and not by any other criteria. Looking at the Green book it looks as tho I should be. Tho no sure whether current Stage 0 qualifies as severely immunocompromised but it does include anyone on follow up (W&W?). Confused
The age for UK NHS immunocompromised has moved down to 50. You are qualified if you have leukaemia at any stage.
nhs.uk/conditions/vaccinati...
My understanding is that vaccinations other than COVID and Flu should either be before or wait until a year after the last dose of CD20 monoclonal antibodies. That destroys B-cells.
Thank you!
Ask your consultant to send a letter! Many gps and practices nurses don't know enough about CLL to give us the jabs we need.. But they do jump if the consultant mentions it 😊
Thanks - good plan
my consultant recommended so GP wrote the script. for other vaccs recommended on this great forum I got no support from consultant but I did use green book to successfully argue. GP did have to refer and get agreement from practice manager so worth persisting. The CLL society booklet was also useful. The only one I have had a NO to is RSV.
The pain was so bad I ended up in hospital for a week. It took them that long to diagnose it.
I didn’t get chicken pox as a child either despite my siblings getting it. However, when I was pregnant they tested for it (as it’s dangerous to the baby in pregnant women) and apparently I had! It can obviously be very subtle in some. I wasn’t 100% convinced but when both my children got CP I didn’t. So perhaps he did have it but never knew?
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