Had the "dead virus" Shindrix shot back in 10/2019 then caught Shingles 1 week later ( around my chest). Tested for immune disorders and diagnosed with CLL in 1/2020. Shingles turned into more painful neuralgia which is very painful today . Doctors have advised me to not get the second "booster" Shindrix shot due to my prior experience..
In the meantime my immune system was destroyed by CLL during 2020 which is a whole different story.
I think the thinking with the Shingrix vaccine for Cll patients is the same thinking for other vaccines. We know going in we are more likely to have suboptimal responses to any vaccine.
I don’t think the message is to not take the vaccines because they don’t work for some people. Some very prominent Cll commentators were predicting the vaccine would be useless for us. As it turns out, more than half of Cll patients who took covid vaccinations developed protective antibodies.
I took the shingrix vaccine and am glad I did. I still take valtrex daily because my doctor did not assume Shingrix would be fully protective for me.
As bad as your shingles attack is, you can never know if it would be worse but for Shingrix.
Shingles suck. I had a mild attack before my Cll diagnosis. I hope you have a speedy recovery and that you have some measure of antibodies, however small, from your Shingrix shot to help lessen the severity of your shingles.
Thanks for the info - I'm still convinced that that my then undiagnosed CLL condition adversely affected my immune system's response to the Shingrix vaccine resulting in developing Shingles within a week. As I mentioned, my doctors advised that I not get the second Shingrix shot.
Thanks also for the info on the Covid vaccine. I've had the two Moderna shots but suspect they may be ineffective since I was treated with V&O for a year ending this past May. Hopefully more optimistic information will develop in that regard.
It has always been my understanding that Shingrix itself cannot cause shingles because it is a not a live virus, at least that’s what the literature I have read states. I am sure if had come down with shingles so soon after my Shingrix shot, I would have suspected Shingrix was the cause.
And shingrix might have triggered shingles for you in ways the doctors do not understand. I hope you have a mild case and improve soon, I had shingles years before my Cll diagnosis (who knows, I might have had Cll then and not known it). Fortunately I had a mild case.
Even if Shingrix somehow triggered shingles for you, I still don’t think the message for people with Cll is that Cll and Shingrix do not mix. There are some rare and serious reactions to most all vaccines.
Shingles is a huge threat to people with Cll. I think each person should discuss with their Cll doctor if Shingrix is worthwhile, my doctor at md anderson thought it worthwhile for me.
My guess is, as it is for most vaccines with us, the sooner we can get the vaccine after diagnosis, the better. The people with Cll showing the best antibody response to the covid vaccine are those who have yet to treat.
I do think you sharing your experience is helpful to the community and if I were considering the shingrix vaccine your post would certainly prompt me to ask more questions from my doctor. If there are many reports of Cll people getting shingles shortly after the shingrix vaccine, that would be worrisome for sure.
My cll doctor/team at Moffitt in Tampa gave the ok for the shingrix shots and Covid vaccines. In fact unless I’m mistaken once Moffitt had the Covid vaccine available they were offering it to patients. I trust them. They saved my life.
I believe vaccines take about 3 weeks before they give full protection. As you developed shingles just a week after the vaccination, it won't have had time to help you very much.
No vaccine is 100 per cent effective, even for healthy people and less so for us with CLL. Maybe you could take an antiviral pill like Valtrex in future, like cajunjeff does.
I'm very sorry to hear about your continued painful neuralgia. I have a friend who has the same pain after an attack of shingles, so I know how horrible it can be.
Wishing you well,
Paula
I have heard that quite a few times. It was too coincidental. My experts still don't think it's worth getting so I won't. My hematologist doesn't really push it and never brings it up anymore. So sorry that happened to you. Best not to get the second shot. 🙏💕
Howdy CLLBLOG-1, Just a simple wish for your speedy recovery.
I had the shingrix vaccine this year one before I started Obinutumazab Nd one afterwards ..I had few side effects and no idea whether its been effective !
Glad to hear no shingles so far - hope it continues that way. Stay healthy!Jim
thankyou for your ood wishes ..fingers crossed
Sorry to hear this and I wish you a speedy recovery. My doctor told me not to have Shringrix. This week I came down with a severe attack of shingles. The pain is excruciating and I’m feeling awful. Maybe if I had Shringrix it wouldn’t have been so bad. It’s a gamble.
I wish you well🙏 HazelUK
Hi Hazel I was offered the shingles vaccine a few weeks ago as I'm of the right age for it on NHS (UK) I was told they only offered the live vaccine and if I wanted Shingrix I'd have to pay. Apparently it would cost me about £500 for both shots and I've not done it yet! Did you get yours free in UK ?
I paid in the uk for the very reason you state the nhs only offers the live vaccine..even so I waited for round about a year to get shingrix
I was happy to see this post, because I have never taken the Shingles Vaccine; in fact, I guess I avoided a good number of vaccines in my older adult years. Not sure why, other than maybe I feared internally it would give me the disease it was intended to protect us against. Then recently I finally gave in when seeing my Primary and had both Pneumonia and Flu Vaccines within the last year. Pneumonia no physical reaction, but the Flu one gave me a mild reaction. I of course did have both Moderna shots, and as many who saw my recent post went on my own and took the first Pfizer shot (didnt tell CVS I had already had two Moderna, and they don't ask on their questionnaire).
Shingles is one my wife has pestered me for years to take, and it does scare me. I've heard how painful that disease is, and I've been scared the vaccine might cause it. Now reading this post I'm extra scared. The new one that is not a live virus is supposedly therefore safe, and it is accurately called Shingrix. There are two shots, and I can tell you that on Medicare the charge at most pharmacies is $180 per shot. My work is Medicare, so I know. The reason by the way you pay $180 on Part D plans, is that almost every Part D plan has an annual deductible of around $435. Shingrix is a Tier 3 or 4, so you will pay toward the deductible and $180 is actual cost according to Medicare.
Anyway I don't know what to do about the Shingrix shot after reading this post. I wish we had a lot more respondents, so we could have a better statistical evaluation. I guess our CLL Specialists obviously have enough patients to have a decent number to evaluate; thus, they would be best to direct the question to. A dead virus shouldnt cause the illness, but why did the person posting get Shingles right after the vaccine shot? Super incredible coincidence?
Carl
Carl, I had both Shingrix shots in 2018 (post being diagnosed with CLL), as my doctor insisted. Each shot made me feel “off” for a few days; Pfizer made me feel worse (mentioning for comparison). Knowing people who’ve had Shingles, I am hopeful I will never get, and that my antibodies will continue to do what they do.
Everyone reacts to the shots differently, but I would encourage you to discuss this with your doctor (and read related articles in order to make an informed decision).
Ps: when Shingrix was initially rolled out there was a lot of discussion on this platform about the risks/concerns involved. Hopefully those threads are still available to read through.
Take care.
I go to NIH as part of their Ibrutinib study. About 2 years ago, I got the shingrix vaccine at NIH upon their recommendation. I didn't have any side effects and NIH does seem to believe that it does provide me some protection against shingles.
I also had a shingles reactivation after receiving my first Shingrex. Ever since diagnosis with Stage 4 SLL in 2016 and treatment right after with 6 rounds of FCR I have struggled with keeping shingles at bay. I had been on prophylactic valtrex the entire time but still managed to get shingles about once a year always on my forehead and scalp once on my nose but it never resulted in post herpetic neuralgia and cleared up quickly when switching to the high dose of valtrex. My specialist also told me to not to bother with the second one but her thinking was clearly that I wasn't mounting an immune response not that it was a direct cause. Almost any stress including infections, vaccinations or trauma can cause a reactivation. My specialist at Dana Farber also monitored my CD4 T cell count which was very low at the time of the first Shingrex (82ul normal 441-2156)
This spring my CD4 count finally reached 217 and my specialist thought I could try without the Valtrex, 3 weeks after stopping the Valtrex I had the worst shingles reactivation ever with extensive and horribly painful blisters in more than one dermatome and severe nerve pain which led to post herpetic neuralgia. I also had lots of stress and had received my Covid vaccine 6 weeks before so I have no idea what exactly brought it on. I have been on high dose Valtrex for 2 months now because every time I lower the dose the blisters come back. I finally saw an infection disease specialist in the lymphoma dept at Dana Farber and the first thing he said was I need to start the Shingrex vaccination again. They gave me the first there. I did not have blisters at the time because I am still on the 1G 3 times a day dose. He explained that they think it will work this time because my CD4 count is higher than it was back in 2018. I go back in 1 month to receive my second Shingrex and I will continue on the high dose indefinitely. I highly recommend you talk to your specialist I think the thinking has changed and they really recommend the vaccine. Shingles is such an intense and serious infection you really want to make sure you've tried everything you can to keep it away!
I had asked my oncologist about getting the Shingrix shots. She said that it would be okayto get it.
So, it’s August now. Flu shot time coming up. Will there be a booster for the COVID vaccination soon?
Not sure if this is the best time to get Shingrix. But, with the horror stories I have heard about getting shingles, I worry about getting it.
I am late 70’s had a mother and grandfather that have gotten shingles, (they have long ago passed )
I had both shingrix shots pre-pandemic and was just thinking about when I might need a booster. One site said for normal immune systems it lasts for 9 years.
So sorry to hear you got shingles after your Shingrix vaccination. We’re still waiting to get it on the NHS here in the U.K. When I have a vaccination now I ask the nurse if I can look at the bottle just to make sure I’m getting what I’m supposed to get. I know I don’t sound very trusting but it’s probably an easy mistake to make now there are two shingles vaccines. I don’t mean to worry you; I expect you got the right one and I do hope your neuralgia gets better soon. I’m just mentioning this for people having it in the future.
I had the live vaccine ten years ago before I was diagnosed with SLL and both Shingrix doses in 2018 after I was diagnosed. No problems with either. I take every vaccine that is offered to me hoping for any protection.
Can I be cured of CLL?
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Don't forget your flu jab.
Explainer: how do you get shingles and who should be vaccinated against it?
