Shingrix and CLL: I am a CLL patient in W & W... - CLL Support

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Shingrix and CLL

Sweetbaboo profile image
Sweetbaboo

I am a CLL patient in W & W. I am wondering if I should get the Shingrix vaccine.

If yes, I received my second Covid 19 vaccine in April and wondered if I need to wait a certain length of time between the two different vaccines.

Thanks for insight into this.

28 Replies

No shingrix for me - oncologist has me on Acyclovir twice a day - tolerating it well! Not too interested in more side effects from strong meds like shingrix. MC

Panz profile image
Panz in reply to MsChief

If I were you I would be seeking a second opinion on this matter. I strongly disagree. Acyclovir will only lighten a case of shingles...maybe.??? That was all it did for me and my Shingles lasted 3 years.

All the very best with what ever you decide and I do not wish Shingles on anyone that is for sure.

Panz 🙂💕🙏☘️

809123 profile image
809123 in reply to MsChief

It’s a dead vaccine for shingles. If your immune system is very weak there is a chance of reactivation of the virus. Shingles is painful.

lankisterguy profile image
lankisterguyVolunteer

Hi Sweetbaboo,-

I must disagree with MsChief , I have had both Shingrix shots in 2017 at the suggestion of Dr. Furman, and both COVID shots in 2021, and had no problems at all with either. My wife ( no CLL ) is extremely sensistive to drugs and vaccines, but sailed through both with only slight redness and sensitivity to the 2nd shot of each.

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IMO- like COVID, the Shingrix shot prevents (or reduces the severity of) a very serious infection that can have life altering side effects. The side effects of the vaccines have been proven to be far less serious and life threatening. So why live with increased risk, when there is a much better alternative?

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As for spacing between vaccines, you should ask your doctor or the pharmacist.

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Len

That being said, I did see another poster on here a while back indicate that CLL specialist Dr. Byrd did not recommend Shingrix.

I would recommend, Sweetbaboo, that you discuss whether to get the shingrix vaccine with your CLL specialist.

lankisterguy profile image
lankisterguyVolunteer in reply to KatieBlue

Here are the unliocked postings that include the terms Byrd & Shingrix ( e.g.: Standard Google search with terms:

<site:healthunlocked.com cll support/Byrd+Shingrix>

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Shingrix Vaccine: Dear fellow CLL patients, I... - healthunlocked.com/cllsuppo...

Nov 20, 2019 — I am trying to decide if I should have the shingrix shot. I know many CLL specialists recommend it, but not all (Dr Kipps and Dr Byrd do not) .

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Vaccines : I just had an appointment with Dr... -

healthunlocked.com/cllsuppo...

Dec 5, 2020 — I just had an appointment with Dr. John Byrd(one of the top cll gurus). ... But am convinced it was the Shingrix vaccine, so long story short, I am ...

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Shingrix Vaccine - Experience of Others...?

healthunlocked.com/cllsuppo......

Jan 3, 2019 — My cll specialist, Dr. John Byrd, at this time does not recommend it. He claims there is insufficient efficacy in cll patients and that there is a new ...

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Shingrex?: I am due for a booster shot for... - CLL Support

healthunlocked.com/cllsuppo...

Aug 19, 2020 — I got the Shingrix vaccine right after I was diagnosed with CLL. ... Dr. Byrd at Ohio State is very much in favor of the use of lifetime Valcyclovir for ...

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Len

mteaney profile image
mteaney in reply to lankisterguy

I go to NIH every 3 - 6 months and in my most recent visit in early April I was informed that their studies of the Shingrex vaccine that I got at NIH 2 years ago indicate that it is, indeed, efficacious for CLL patients. BTW, I had no negative reactions to the vaccine other than a slightly sore arm at the injection site.

Thank you for your input!

Thanks so much.

Thank you!

Hi, I’m also on W&W and have had both shingle vaccines with no reaction.

I had the shingrix vaccine at the recommendation of my Cll doctor at md anderson. It is unknown if it gives me full, partial or no protection from shingles so I take a vacicyclivor pill a day as a belts and suspenders approach.

I had zero side effects from shingrix and the vacicycovir is an easy drug for me.

I am also on W&W and my consultant has recommended shingrix, which I hope to have sometime soon. (Though I understand it’s not normally free on the UK NHS) What conditions or markers in a patient would prompt a consultant not recommend shingrix ? I also don’t understand why some folks are on a daily anti shingles medication. Can anyone enlighten me ? Thanks

that's a good question. if you put it up as a post you might get more answers.

My first symptom before I was diagnosed was mouth sores. Also for cold sores. It is for more than shingles.

my consultant recommended it, here in uk, but it did take some finding and it isn't paid for by the nhs ..it cost roughly £500 for the two injections at City Docs.... shingles is a miserable malady... and when I was diagnosed with CLL, nearly 14 years ago now, I was told by consultant it would be when I got shingles not if ..also the pain can last long after the initial rash and blisters go ..years I mean

I was going to get this vaccine. My consultant said I could but didn’t have too much concern if I did or didn’t. I think it’s sensible to wait a period of time between vaccines. Best to check with the health provider administering.

Get Shingrix! I got a severe case of shingles a week after having my enlarged spleen removed due to CLL. Four years later I still have excruciating pain from them. Anything that mitigates the risk of shingles is prudent.

Absolutely get the shots! Check with your doctor on how long you should wait before getting it. Not going to sugar cost it, the Shingrix shots made me feel worse than the COVID shots. BUT the side effects were very short-lived. I have heard that Shingles are very painful so be proactive.

Sweetbaboo profile image
Sweetbaboo in reply to J1015

Thank you so much for this comprehensive reply. I appreciate it!

ClassyLady3 profile image
ClassyLady3 in reply to J1015

I had both Shingrix shots and had multiple side effects in 2019. Just this month, I developed shingles BUT a much milder case! A course of valcyclovir brought respite from the pain after the first pill, and complete healing of the rash and itching in 7 days. I suggest the shot if your doctor recommended it (mine did). Also, I suggest getting them while on W&W like I did, if at all possible.

I had the two-jab Shingrix pre-diagnosis but at a time where retrospectively I can say I already had CLL based on my CBC at the time. I took the first shot on a Friday afternoon and became very lethargic, had chills, and spent most of Friday afternoon and Saturday in bed. By Sunday morning I was fine. When I got the second shot, the same scenario replayed. I would definitely seek medical advice regarding the spacing between different vaccines.

Good morning, I’m on W&W also and my CLL specialist had me get the shingrix shot. The doctor told me to wait for two full weeks after my second shingrix shot to get my covid shot.

I too participated in the NIH study 2 years ago for Shingrix efficacy. If I remember correctly, the findings were that maybe half of the cohort produced antibodies, but they didn't let us know on an individual basis. I also participated in the Hep B study at the same time and learned that I did not produce antibodies.

My CLL specialist (Dr. Bill Wierda, MD Anderson) recommended Shingrix vax for me. He's also a top tier CLL doc.

You may find this useful:

cllsociety.org/2019/12/vacc...

J1015 profile image
J1015 in reply to nvrbeold62

I also see Dr. Wierda. Great doctor who I completely trust.

I don't have CLL but got shingles about a month after the second Pfizer vaccine and it is NO FUN AT ALL. I now wish I had gotten the Shingrix before I got the Pfizer as I am reading more anecdotal evidence that somehow the immune system reactivates the shingles in some people - I one of the unlucky ones. It is in my upper left shoulder waist area and it is brutal, especially at night. I am on second week of Valacyclovir without much improvement.

Here is the NIH study:

ashpublications.org/blood/a...

Summary: SHINGRIX: ~60% of untreated patients CLL patients and ~40% of BTK-inhibitor (ibrutinib or acalabrutinib) treated patients developed an antibody response against the shingles virus. This response rate is less than in the general population, however we are encouraged by these responses and recommend the SHINGRIX vaccine to CLL patients that have not yet received it. However, we do not know how long the antibody response lasts.

I have two onchologist. One close to me and one 425 mi away. I asked both. One said get it. The other said dont. So i had the first one and not the second.

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