Shingles vaccine

[Lem1]

Are you getting the shingles vaccine?

[WinJ3]

👍🏼 Yes...None live. ....Shingrix two parts ....Five months apart.

[Lancerlady in reply to WinJ3]

I was able to get the first sort. I started treatment I was told not to get the 2nd part. I did Ritaxmaub and Imbruvica a high dosage at first. Now I am at 140 Imbruvica. I am stage 4 Cll.

[GMa27]

Not now. My CLL expert does not recommend it. Being tested now on CLL patients. Many do recommend it. During Covid I would not personally cuz the side effects/ reactions could be similar to virus and I would not want to deal with do I don't I - testing- quarantine for nothing.

[mantana]

Me (with CLL) and my wife (no CLL) got the first Shingrix shot at the beginning of September.

I didn't have any side effects (except slight pain at the injection site for a day or so). My wife felt very weak in the evening.

We're getting the second shot this Tuesday!💪

[Jackpot]

I had the first shingrix shot about four weeks ago. My CLL doctor recommended it. I finished treatment (acalabrutinib and venetoclax in a clinical trial) at the end of Sept.

I had a sore arm for a few days but that was it. I will get the second shot in January.

Cindy

[cajunjeff]

I had shingrix shots a couple years ago. I am just getting over a six month bout with shingles, not as bad as that sounds.

I have had about a 2 inch square patch of shingles on my chest that has been hard to chase away. One might conclude Shingrix did not work for me or just as easily conclude it protected me from a serious outbreak.

Valtrex didn’t seem to work much. I took a dose of steroids last month that did work and the patch of shingles is almost completely gone.

If I had it to do over again, I would still take the vaccine. I has no problems with the shot itself and I think it helped me keep my shingles attack be a small and relatively mild one.

[SofiaDeo in reply to cajunjeff]

How's your Lysine vs Arginine intake overall? A highish Lysine environment isn't conducive to herpesvirus viability/replication. And, as always, a low sugar non-inflammatory diet always helps. And low stress, which has been pretty much impossible this year! But the pesky things sometimes just don't want to leave our skin.

[cajunjeff in reply to SofiaDeo]

Sofia, I can safely say you are the first person ever to ask me about my lysine/arginine ratio. :). I have no idea. Today I cooked a chili with ground sirloin, Italian sausage, red bell peppers, orange bell peppers, Anaheim peppers, jalapeño peppers, onions, tomatoes, corn, carrots and blue moon beer. Would that be more lysine than arginine?

I don’t know why my shingles lingered. My dermatologist called it atypical. I think I finally got it beat. It was mild but I had a couple small line of shingles that started to hurt. I can’t imagine how painful a full blown shingles outbreak would feel.

[Big_Dee in reply to cajunjeff]

Hello cajunjeff

I was right with you until you added blue moon beer. I am not sure the chili would make the blue moon beer taste better. Definitely an acquired taste.

[scaler59 in reply to Big_Dee]

Blue Moon beer will keep you from getting Shingles.

[Big_Dee in reply to scaler59]

It would be cheaper than the Shingrix shots, but kind of like the ground hedge apples I ate to slow my CLL. I decided I would rather have the CLL.

[Big_Dee in reply to cajunjeff]

Hello cajunjeff

I am not advocating for or against getting Shingrix shots. I have not gotten shot. I had very small 1/8 inch x 3/4 inch line of what my GP told me was shingles. I used some steroid cream and it was gone in one week. That was over 10 years ago. I do not see a need for me to get Shingrix shots, but might feel differently if I had a worse case of shingles. Blessings.

[cajunjeff in reply to Big_Dee]

I had a mild case of shingles about fifteen years ago, no big deal, a small line on my forehead that did not hurt so much as it did itch.

I am not trying to talk you, or anyone, into getting the shingrix vaccine. Your logic escapes me though, its like saying I will wait to get homeowners insurance until after I have had a bad house fire.

Shingles is an insidious virus and its still a bit of a mystery why the shingles virus, dormant since our chicken pox as a kid, suddenly becomes active. We don't know who among us with cll will have an outbreak or when, we only know that as a group we are much more likely to have a shingles outbreak due to our compromised immune system. And its likely that our risk increases with age.

Given how devastating, painful and scarring a full blown singles outbreak can be, I think getting the vaccine is wise. I have not seen anywhere that the risk of side effects with shingrix is significant, I had none. The question for us with cll and shingrix is how well will it work.

Ill never know if it worked for me, but I suspect it kept my rash very small. The upside of the vaccine is way greater than the downside. If your logic is that because you had a small shingles event in the past, any event you have now would be similarly mild, I dont think that is true.

I think our risk goes up over time and its considerably higher than the general population.

[Big_Dee in reply to cajunjeff]

Hello cajunjeff

I am not anti-vax and have never had chicken pox. Not sure I even had shingles. A lot of suppositions. That is what makes US so great, free choice.

[cajunjeff in reply to Big_Dee]

I dont get the free choice comment, never did I imply you should have a mandatory vaccine. I was just replying to you saying that you do not see the need to take a vaccine that might spare you from a very serious cll complication. The need for a shingles vaccine is just like the need for a flu, pneumonia or small pox vaccine.

And I of course do not know if you had shingles before, you had said your dr diagnosed you with shingles. The shingles virus comes from the chicken pox virus we had as kids, it just stays dormant for decades and then suddenly activates again.

If you do not think the vaccine affords protection or don't want to have it, thats of course up to you. I was just commenting on your reasoning for not getting the vaccination, which still is not clear, not that you owe me any explanation.

[Big_Dee in reply to cajunjeff]

Hello cajunjeff

I don't believe I implied that the Shingrix shots were mandatory. Like I said I never had chicken pox when I was a kid or later for that matter. I believe we each should make a determination of risk we are willing to take, not that I am worried that the shot will harm me. Blessings.

[cajunjeff in reply to Big_Dee]

Not getting the vaccine because of a concern it might hurt you is understandable. For whatever it is worth, shingrix is not thought to cause serious side effects. Usually its juts some transient soreness at the injection site.

Its interesting you say that your doctor diagnosed you with shingles, but that you have never had chickenpox. I do not think it possible to get shingles without having had chicken pox first. You could get a case of adult chicken pox from someone with shingles. Adult chicken pox can be severe.

Big Dee, I have no dog in the hunt of you getting a shingrix vaccine and its not for me to suggest it anyway. But it might be worth a talk with your cll doctor just to get an opinion. Shingles can be a cruel and devastating illness for those of us with cll.

I totally get the point of view that you are concerned the shot might hurt you, my partner doesnt take flu shots for the same reason.

[Big_Dee in reply to cajunjeff]

Hello cajunjeff

Like I said in my last post, " not that I am worried that the shot will harm me." The supposition you can only acquire shingles from having had chicken pox is normally considered the case, but not always. And yes I have to protect myself around those that have chicken pox, adult case can be much more worse than childhood cases. We are all different just like I am not effected by poison ivy, poison oak or wasp stings. Other than measles, never had the general run of childhood illnesses.

[cajunjeff in reply to Big_Dee]

Duh me, I misread your post Big Dee. Sorry and good luck with any plan you have.

[Justasheet1]

Jeff,Why steroids? It troubles me that both valacyclovir and Shingrix didn’t do it for you.

Jeff

[cajunjeff in reply to Justasheet1]

It trouble me too that my shingles patch lingered so long, small and relatively mild that it was. My dermatologist described the ash as atypical and before he biopsied it, he wanted to see if steroids would dry up the inflammation. I did ten days worth of oral steroids and that did the trick, I hope. Its still healing, but I am not having any new rashes which is encouraging.

[Justasheet1 in reply to cajunjeff]

Thanks Jeff, I’ll remember this if it ever happens to me.

[PaulaS Volunteer]

Hi Lem1, If you do decide to get a shingles vaccination, make sure it is the non-live Shingrix vaccine, not the older, "live" Zostavax which is NOT safe for CLL patients.

Some doctors are wanting to wait a while before recommending Shingrix for CLL patients, as it is relatively new. Others are recommending Shingrix already. I personally would have the Shingrex (two part) if it were offered me, but it's hard to get in the UK at the moment.

Paula

[SofiaDeo]

I wish I could get Shingrix; it's been unavailable locally recently whenever I had a non-treatment "window of time" I could plan to take it. Since I am starting another treatment soon, am going with high-dose Flu shot tomorrow.

[goldstream]

I'm in Canada and my oncologist recommended that I get the Shingrex shots. I have now had both of them (Nov 2019 and May 2020). Cost me $150 I believe at a public immunization clinic. No reactions of any kind.

[newyork8]

Absolutely get it. Extremely painful for me...no risk to vaccine.

[marcyh]

I took both of them a couple of years ago. My immune system is good, but I felt quite unwell with the second one.marcyh

[orange33]

Hi Gp did not recommend it when I inquired about it.

[bachplayer13]

i got the live shingles vaccine before i knew i had cll. few years before. at first my specialist told me not to get shingrix as the effect on cller's was unknown. but made an executive decision to do it. as both my brother and grandmother had gotten shingles (neither have cll) and i'm not interested in getting it. i did not have much of a reaction to the first shot a mildly sore arm for a few days. 2nd shot was 4 months later.

i felt queasy for a bit and warm but no real fever and the that passed quickly. that was it. i'm not sure how much of an immune response i made and i still take valtrex phrophylatically per my cll doc. incase the vaccine didnt work for me which it likely.

i took the high does flu vaccine this year and was sick as a DOG from influenza B omg. at least it wasn't covid....thanks goodness

[ClassyLady3]

I had both Shingrix shots last Sept/Nov. unfortunately, I experienced most of the side effects listed in the literature (except anaphylaxis and death).

I have recovered fully.

But, I am so grateful I could take it.

A man I know had a terrible case of the real shingles. His quality life was devastated as he never recovered. He was the reason I got the shot. My oncologist had instructed me to get it while I was on W&W.

[Rafe]

Yes, I have gotten the Shingrex shots. It was part of a study on the effectiveness of the vaccine with CLL at the Mayo Clinic. I had Shingles a few months before the shot and would prefer to not go through that again.

[Lem1]

Thank you everyone for sharing your thoughts and tribulations. I will make sure the shots I get are not the live vaccine for sure. I will probably wait until 2021 to receive the vaccine because 2020 has been such an exhausting year for me. First Covid in March, very sick for 6 weeks, but fortunately not hospitalized. Residual neck swelling and mild scarring of my lungs thought to be post Covid. Then diagnosed in September with CLL. Stage 1- because of swollen lymph nodes which were very painful- and prolonged because thought to be related to Covid. Started on Imbruvica in October. No side effects so far, and am just starting to feel better and get my energy back. So after reading your posts , I see the value of getting the shingles shots, but might wait until early next year just in case I do have a reaction. I feel like I’ll be better suited to fight back. I very much appreciate your input. Very best to you all for the new year.

[Lem1]

Thank you for sharing your thoughts! I still have not gotten the shingles vaccine after 3 1/2 years of my diagnosis of CLL. The replies were super helpful, and it seems like there is variance in whether it is recommended or valuable. That is not to say I might roll up my sleeve someday.

[AussieNeil Administrator in reply to Lem1]

Lem, did you read this recent post on the pros and cons of having the Shingrix vaccine?healthunlocked.com/cllsuppo...

Neil

[Lem1 in reply to AussieNeil]

Thank you for sharing Neil!

[Lem1]

i actually don’t see the report with the link. It takes me to others comments about shingles and the vaccine. Can you forward it again?

[AussieNeil Administrator in reply to Lem1]

I'm not sure to whom you meant to reply, but irrespective, this CLL Society article on Shingles is well worth reading cllsociety.org/2021/08/shin...

"But the worst part may come after the rash has resolved. Some 10-18% of folks may have to deal with post-herpetic neuralgia (PHN) a difficult to treat extremely painful complication of shingles that can last years.

No-one wants shingles, but it is more common as we age and our immunity wanes, and it is even more common and severe in CLL patients. It is estimated to occur in one in three older adults at some time in their lifespan.

There are two highly effective preventive measures.

There are very safe, inexpensive generic oral antivirals that you can take daily to prevent outbreaks: acyclovir, valcyclovir and famciclovir.

There is also the Shingrix vaccine. "

I'm unfortunately in the 10 - 18% group with "PHN, a difficult to treat extremely painful complication of shingles that can last years."

My recommendation is not to procrastinate any longer.

Neil

[Lem1 in reply to AussieNeil]

Thank you! Very helpful! I will schedule the vaccine!