Shingles vaccine

[sun_flower]

Oh my l had my 2nd vaccine yesterday and l have had a horrible night, shivering, headache, aches and pains and peeing every half hour,the lst one was bad but the 2nd horrendous side effects 😢 bed day today 😢

[Phil4-13]

sun_flower, oh, my! Those are the kind of reactions I have from most any kind of vaccine. I have not taken the shingle vaccine so far for that reason. Well, I've gotten myself psyched up to go get it. I'm simply planning to probably be homebound for a few days. It is better to get it than the shingles. I send wishes of comfort and rest to you. 🙂 Sandra

[sun_flower in reply to Phil4-13]

Yes make sure you are prepared its horrible, l hope you don't suffer too much,l won't be having any more, let me know how you get on xx

[Phil4-13 in reply to sun_flower]

I sure will, sun-_flower. I have planned for the 1st week in January of 2023, so insurance will cover it. 🙂 Sandra

[Panz in reply to Phil4-13]

You are right on I would gladly take a week of discomfort then the 3 years I had with Shingles!!! The sad thing you can get Shingles more than once!

Panz💕🙂👍☘️🙏

[Pekingese]

Oh I’m so sorry I know how you feel it’s awful, my 2nd Shinrex I was I’ll shivering in bed pains just couldn’t get warm. Hope you feel better soon. Ros 🤞

[OkanaganCLL]

So sorry to hear about both your awful reactions, sun flower! 😔 Hoping you feel better soon! 💐 I’ve yet to have my shingles vaccine!! Just can’t seem to remember! And I’ve had shingles Twice!!

Cindy

[Wroxham]

Feel better soon Maggie.

Suex

[sun_flower in reply to Wroxham]

hi Sue,hope you are keeping well xx

[Wroxham in reply to sun_flower]

Im ok Maggie thanks. Ventoclax treating me kindly so far. Stay safe.

Suex

[sun_flower in reply to Wroxham]

And you xx

[Pinkcar]

So sorry to hear of your reaction. I had my 2nd one this week and suffered with a fever for 36 hours. In the past, shingles left one side of my face numb for weeks. Sending you best wishes for a speedy recovery.

[camper2]

Yes it is awful but not as awful as shingles - I feel for you! Perhaps you could plan something for when you feel better.

[kitchengardener2]

Oh bless you, hope you soon feel better. Just rest today. Got to be better than having Shingles. Do rest though, my nurse friend always insists that resting does help the vaccine get to work. xx

[GAVIOTA]

Hello, I had my first Shingrix 10 days ago and it also affected me a lot, chills, body aches and tiredness for almost 3 days.

However the tetanus and pneumonia vaccines I had recently no side effects ..Idon't know if I will have the second one.

[AussieNeil Administrator in reply to GAVIOTA]

Have your second Shingrix. I'm approaching my 100th day in pain from shingles and post herpetic neuropathy. August and September are a blur.

Neil

[sun_flower in reply to AussieNeil]

Oh how awful for you,yes in reflection a few poor days are better than shingles,l hope you get better soon x

[SycamoreN in reply to AussieNeil]

Poor Neil. Sorry you’re still suffering from shingles pain. It’s now 6 months since I’ve been in pain with post herpetic neuralgia. When I went to get the shingrix vaccine however, the nurse said I was still too ill from shingles to take the vaccine so asked me to go back when I’m better.

I feel for anyone who’s had shingles.

[GAVIOTA in reply to AussieNeil]

Hi Neil.

What a bummer that it's affecting you so much. I hope you get better soon.

On second thoughts I will have the second vaccine. It will give some protection.

But I have to have the second one in 6 months when I will be taking the Ibrutinib.

Thanks for your advice

[AussieNeil Administrator in reply to GAVIOTA]

Having your first vaccination prior to starting ibrutinib is good, even if you can't avoid having your second vaccination while you are on ibrutinib. You have a good chance at producing plasma cells that will churn out antibodies, plus memory B cells, along with active and memory T cells. Your second Shingrix vaccination should then boost your immune response. Per the below paper, ibrutinib does help restore our immune system.

Impact of long-term ibrutinib treatment on circulating immune cells in previously untreated chronic lymphocytic leukemia

pubmed.ncbi.nlm.nih.gov/336...

Neil

[GAVIOTA in reply to AussieNeil]

I have been lucky to at least get the first Shingrix vaccine and probably the two pneumonia vaccines before starting treatment, thanks in part to the forum and to you in particular for letting me know about it. My doctor didn't talk to me about it.

Very useful all your information as always. So even though Ibrutinib is an immunosuppressive drug it can also restore our immune system in the long term? hope so.

Thank you and get well. Good night

[Angie4now in reply to AussieNeil]

Hi Neil, your the reason I got my Shingrix vaccine from reading your posts. You’re always very informative. Thanks you! I pray that you get better soon. 🙏🤗🙏

[Saju21]

for those not eligible for the free nhs vaccination where you have to be over 70, how do you arrange / pay for it in uk?

[GAVIOTA in reply to Saju21]

I don't know. Here in Spain I got it for free because I belong to the risk group.

[Angie4now]

My arm was extremely bruised for almost two weeks, I had a headache and body aches for a while. I hope you feel better soon.

Best,

Angie

[TruthJunkie]

So sorry for those side effects. Just realize, though, folks, that not everyone has such a/e from the Shingles vaccines. I did not. Maybe a day of not feeling great, that’s all. We watched our 98 year old friend suffer through Shingles over the Holidays last year, and it was awful for her. Feel well soon!

[Edalv]

There are two shingles vaccines. People with CLL should not get the live or attenuated virus vaccine. We should only get the Shingrix vaccine. I got it last year, I had a sore arm for 2-3 days but no other major side effect. It’s a two shot regimen. They recommend the second shot within 6 months. I waited 4 months to get the 2nd shot. Same side effect than the first one. The only issue is that Medicare doesn’t cover the cost… but it worth it.

[Mother1943 in reply to Edalv]

Those side affects sound awful. I had the shingles vaccine many years ago, don’t remember any side affects. I should get the Shingrix shots, I know. Getting the Covid and booster shots, now the flu shot. And there is another booster I am getting this week. I don’t know where to fit the shingles shot in. And Edalv you are right Medicare doesn’t cover it.

[Edalv in reply to Mother1943]

Medicare doesn’t cover it, but it’s worth the cost. In my case I had a sore arm for 2-3 days. After reading the pain and suffering from people that get shingles, it’s more than worth it… So, if anyone is still in doubt, don’t hesitate too long…

[sun_flower in reply to Edalv]

Yes definitely l am much better just two days, l am glad l wrote the post now so much good advice x

[larrymarion]

One alert about Shingrix and CLL. If you're taking Ibrutinib, or its second generation cousins Acalabrutinib or Zanabrutinib, or if you're receiving Rituximab or Obinituzimab--these treatments interfere with effective antibody production after vaccine administration. You may heard/read about how these meds have blocked development of COVID antibodies after receiving the vaccines. If not, ask and i'll send links to the LLS reports. Well, the same thing happened to me with Shingrix. I was on ibrutinib when i got the shingrix vaccines. Fast forward several years and i suffered a bad case of shingles. My hemoc and NIH don't have data but are pretty sure i was victim to this phenomenon--our loused up B cells withIbrutinib weren't able to make the shingles antibodies.

so if you're on a BTKi or one of the CD20 chemos, check in with your hemocs about shingrex timing. Just like with COVID vaccines, some docs say it's okay to hold off on the Ibrutinib pills when you get the shingrex. But this is a complicated question with no data, just hunches, so make sure you and your hemoc are in synch on this.

Either way, get the shingrex vaccine no matter what it costs and no matter the side effects. Take it from a shingles victim, a few days of discomfort from the vax are nothing compared to six months of shingles. Plus, the anti shingles pain meds have side effects, too.

You know the old cliche--an ounce of prevention is worth a pound of cure? in the case of shingles, think of it as an ounce of prevention is worth twenty pounds of disease and cure.

[caven in reply to larrymarion]

Such WISDOM. Thanks for this reminder from someone who has 'walked the walk.'

Either way, get the Shingrix vaccine no matter what it costs and no matter the side effects. Take it from a shingles victim, a few days of discomfort from the vax are nothing compared to six months of shingles.

[StBon]

Sad you are having a bad time with it. Guarantee that is still better than getting Shingles. Done both. Hang in there; it will be better soon

[bayside64]

I had a bad reaction to the first shot. Specialist told me not to take the second dose.

[Gisygirl]

I don't know if I ever had chicken pox so have not had the shingles vaccine. My Mom had shingle twice. Very painful on her arms

[casanova]

It's always horrible to feel rubbish after having a vaccination to keep yourself safe, so I am glad you are feeling better Sun Flower and it's certainly worth feeling unwell for a limited time rather than suffer full blown shingles.

I developed Cellulitis after my first shot and my GP thought it was just one of those things but when I developed Cellulitis again after my second dose the GP agreed that it was a reaction to the vaccine. Not pleasant but shingles is much worse.

I would add I am scrupulous with personal hygiene and always insist the injection site is swabbed prior to injection. I have never had Cellulitis before despite having numerous injections and vaccines.

I hope you are improving Neil, shingles and post herpetic neuropathy pain is awful. My episode a number of years ago was the only time I burst into tears at a consultation as the pain was constant. Take care.

Maureen [UK]