I have CLL. Not in treatment yet. Getting the shingrix vaccine soon. First dose.

[Vacationmountaintop]

Are the possible side effects worse for a person with CLL? Can anyone speak to this. Thank you

[mantana]

I'm also W&W, had both Shingrix shots, the only side effect was sore arm for a day or two.

[Vacationmountaintop in reply to mantana]

I hope it goes that well for me too. Thank you

[Hazel33 in reply to mantana]

I would trade that any day. I have shingles across my tummy/back and it’s excruciating and debilitating. It’s one of those illnesses you don’t expect to happen. X

[RosettaClapp in reply to Hazel33]

when I was first diagnosed some 14 years ago now the fct that I would get shingles sooner or later was the only advice the consultant gave me ! so I got the shingrix shot as soon as it was available to me !

[JEEA in reply to RosettaClapp]

Rosetta-+is there a link between CLL and shingles ie are we more likely to get shingles--or was the consultant just meaning that many get it sooner or later?

[AussieNeil Partner Administrator in reply to JEEA]

The risk of shingles increases as people get older because immunity drops as we age. Having CLL increases this risk, because we are immune compromised.

Neil

[JEEA in reply to AussieNeil]

Thank you . Of course!

[RosettaClapp in reply to JEEA]

Not exactly a link but with the immune system being lowered by cll and also by aging the chances are increasing

[JEEA in reply to RosettaClapp]

Thank you. Of course. I appreciate both you and AussieNeil answering. I had a shingles vaccine probably about 8 years ago, I live in the UK so it wouldn't have been Shingrix. It was pre my CLL so was probably a iive one. I'm not sure if Shringrix is available yet on the NHS. I need to check that out. Worth getting I think as I am now 77.

[RosettaClapp in reply to JEEA]

Im in the uk too .. and since the nhs jab is live, and not suitable for us CLLers I paid for my shingrix jabs(still not available on nhs sadly) £500 the two from city docs in Bath ..consultant recommended it so I had it done

[JEEA in reply to RosettaClapp]

Thanks Rosetta. I expected one might only be able to get it privately. Gosh--£500! That's a lot. I live in Hertfordshire so will need to see what might be available locally.

[JEEA in reply to JEEA]

Just checked on the internet--£500 seems the standard price. Just thought--can you have Shingrix if you have already had the live Shingles vaccine in the past? Or would that cause problems?

[AussieNeil Partner Administrator in reply to JEEA]

Re-exposure whether by the virus resurfacing or vaccination, stimulates memory lymphocytes, boosting your immunity.

Neil

[JEEA in reply to AussieNeil]

Thank you Neil. I'll look into booking somewhere and paying for Shingrix. Important I think. Us Brits just get used to not having to pay for our medical needs by and large.

[Hidden]

I just had the first immunization before starting treatment, my arm was extremely sore for three days but no other problem.

[Vacationmountaintop in reply to Hidden]

thank you

[Ironj]

I had my first dose about a month ago. Just a sore arm. I think you’ll be fine, it’s better then the alternative of getting shingles. Best wishes

John

[Vacationmountaintop in reply to Ironj]

thank you john . That's good to know.

[sweatbee]

I had both doses of shingrix a year ago and had absolutely no problems.

Hal

[Vacationmountaintop in reply to sweatbee]

thank you so much. good to hear. Im feeling better about getting it now.

[GrumpyFrog]

There is no reason to think the side-effects would be worse for someone with CLL. I had my second shot recently and felt tired and achy for an afternoon. The next day I was fine except for a slightly sore arm. Typical vaccine reaction - nothing to worry about.

[shoshanaz]

I got a really sore arm and a small area of rash a few inches beneath the injection site. The side effects really weren't any worse than some other vaccines.

[Northland]

I had my first shingrix vaccination a few months before I was diagnosed with CLL in September 2018 and my second dose 5 months after while I was on W&W. When I went on Imbruvica in April 2020 I got an alarming and very itchy rash on my shins. It went away after a year. My hematologist wasn't sure if it was from the CLL, Imbruvica or the shingrix vaccinations but I thought it was from the shingrix. Any thoughts?

[PaulaS Volunteer in reply to Northland]

Hi MarkoK, If I've done my maths right it was 14 months after your second Shingrix jab that you got the rash, so it seems unlikely for the Shingrix to have caused the rash. Rashes are very common with Ibrutinib, so I would have thought that was much more likely to be the cause.

Paula

[Luap001]

I had both doses of Shingrix about 4-5 years ago. I had the first dose on a Friday afternoon and I became lethargic enough to remain in bed until Sunday morning. This played out the same way for each dose. So if you react similarly, you can plan accordingly: You will be mostly in bed for about a day and a half and then fully recover thereafter.

[Mogal]

I had both Shingrix vaccines while on ibrutinib and had no side effects other than mildly sore arm. Hope your experience will be the same.

[Dynamite1976]

I did not have any bad reactions to the Shingrix shot.

[Willardo]

I have CLL. Have had both shingrix shots and no side effects other than slightly sore arm for a few days.

[Vacationmountaintop in reply to Willardo]

thank you

[Pacificview]

I have CLL and it was a normal reaction. 1st shot was a nothing burger. 2nd dose produced side effects like the second moderna shot.

[Vacationmountaintop in reply to Pacificview]

oh no !!! You said u had side effects like from the second moderna shot? I got very bad hives from 2nd moderna shot. Did that happen to you?

[Pacificview in reply to Vacationmountaintop]

Sorry you had hives! No, just body aches, headache, sore arm.

[Vacationmountaintop in reply to Pacificview]

ok, I feel better now😋

[ViPOR]

After multiple chemotherapy and 4 clinical trials ( two CAR Ts, 1 Ibrutinib trial and 1 VIPOR trial for my aggressive Follcular NHL, I am in a 13 month CR. I just got my Shingrix first shot about 2 hours ago and so far arm feels fine. I did have a bad case of the shingles about 1 month after my CAR T trial in 2016 and I do not want to get shingles again if I can help it!

[t2aa]

I had my first Shingrix shot back before treatment and got very sick after the first dose.. if there was a listed side effect, I had it! However, I got nothing but a sore arm on the second! Still— way better than actually getting Shingles!

[Imalpn]

I had both shingrix shots and am glad I did…no issues whatsoever.

[Pin57]

In W&W mode early stage of CLL (no treatments yet) n big on getting vaccines thru-out my life as I’ve seen those that don’t and then suffer consequences including anti-vaxers for shingles, covid, even polio back-in-the-day (sad story on that).

As for the Shingrix vaccine, the 2nd shot wiped me out for a couple days but I weathered it, not a big deal. My take on side-affects is yes they are there but vast majority are short term - feeling crappy etc… but given the big payback that vaccines provide it’s worth it. You don’t want shingles, so I suggest get the shots.

That’s my advice, but … always consult with your doc first regarding your unique situation cus there are always exceptions.

[Vacationmountaintop in reply to Pin57]

thank you

[janvog]

I have CLL, age 86 and take Imbruvica. I got the two SHINGRIX shots a year ago. Second shot sore arm. No other reaction.