CLL Support Association
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Shingles

Please give information on the Shingles vaccine for us with CLL. I had my first Shingles DX and after I am cleared, I want the vaccine. Diagnosed CLL 2013, bone biopsy, W&W, age 75. Patient of Dr. Keating. Thank you very much.

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Takk to Dr. Keating.

The new vaccine is Shingrix, two shots... some doctors are prescribing it on a patient by patient basis.

It is not yet universally recommended for immunocompromised patients, it depend on your immune system situation.

cdc.gov/vaccines/vpd/shingl...

~chris

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Thank you. Will put in a call.

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According to my specialist Shingle vaccine is a live vaccine and not recommended for immune compromised people.

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Appreciate your reply. I will check with Dr Keating before doing anything with primary care doctor. Do not want to make things worse.

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Shingrix is NOT ALIVE...!!

cdc.gov/vaccines/vpd/shingl...

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Good to know. Thanks for the uptodate information.

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Not sure if the vaccine has changed any BUT CLLers SHOULD NOT HAVE THE VACCINE for shingles as it is live. Hubby is on Aciclovir 3 x per day for the rest of his life as he had a mild version of it a few years ago.....long before he was diagnosed Jan.2017.

Hope this helps...... please make sure that all Questions are answered before you go ahead.

Susiecarer

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This is a NEW shingles vaccine called SHINGRIX, it is NOT the old live vaccine... Shingrix is not alive.

We are just awaiting FDA recommendations for CLL. Many here have had it with minor sore arm issues for a day or two...

Shingrix is amost twice as effective as the old live vaccine...

CDC on Shingrix

cdc.gov/vaccines/vpd/shingl...

~chris

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Interesting !!!! Shall have to read up on this. Wonder if it will be available in the UK eventually.

Susie

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Here is the website... it is approved by the EMA for EU

shingrix.com/index.html

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What do you know about practice in Canada in terms of prescribing Shingrix for CLL patients?

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I believe Ontario has switched from Zostavax to Shingrix in their elderly innoculation program... but this is hearsay...

Each province will be different in funding and delivery

~chris

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So much for hearsay, just met with my infecious diseases doctor and Shingrix is NOT public funded currently in Ontario.... it might be available through private insurance or its ~$400 out of pocket.

I would pay that in a heartbeat... my shingles experiences have been simply awful and the damage remains to this day..everyday...

~chris

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My doctor is Keating too, he told me I should get the shingrix vaccine and the prevnar vaccine as well. He did suggest I suspend my ibrutinib for a couple days before and a few days after the vaccine, I forget why though.

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Regarding Shingles risk, I recently was told by Dr. Furman that taking prophylactic daily doses of Valtrex (valacyclovir) or Acyclovir is important during treatment with Rituxan, Ibrutinib, and/or Venetoclax and he believes they are more effective in preventing shingles than even the new Shingrix vaccine.

Len

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Hi Len

Does he also have all his patients take a prophylactic anti fungal when on Ibrutinub

Thank you

Heathers

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Hi Heathers,

When the problems with Pneumocystis were first uncovered in trials for Idelalisib approximately 2015- Dr. Furman added an antifungal, but in 2018 he tested my T-cells for CD-4 and stopped the antifungal when the results were normal. (The two prophylactics Bactrim & Atovaquone are also antibiotics, so there's risk of developing resistant bacterial infections).

However, I decided to stay on Acyclovir anti-viral even though I had both Shingrix shots, the risk of extreme pain and severe nerve damage is just too great. The Acyclovir is cheap and I have been on it for 6 years with no problems. There's little risk of resistant infections from these drugs, per Dr. Furman.

Len

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I agree Len... I would want the Shingrix vaccine and prophelactics like Valtrex, plus Bactrim for PJP... this is what I had on Zydelig (idelalisib). But aspergillus ultimately got me, sometimes you just can't win.... 😫

They are seeing some HepB reactivations on Imbruvica (ibrutinib), do you know if they are using prophelactics for that?

~chris

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The new killed virus version sounds like a good idea. I just keep getting the runaround on when I can get it. (I'm in the U.S.)

Shingles is a pretty awful condition. Aside from the pain, one of the commonly used (gabapentin) has psychoactive effects that really bother someone.

I'm getting this from a friend of mine who is recovering from shingles, and he's not enjoying it.

I'd like to get it, but I'm also afraid (paranoid?) that somebody might accidentally give me the live version.

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The newly approved (2017) non live vaccine is Shingrix, the older live vaccine is Zostavax® ZVL (zoster vaccine live), a shingles vaccine in use since 2006.

historyofvaccines.org/conte...

See cdc.gov/vaccines/vpd/shingl...

What Everyone Should Know about Shingles Vaccine (Shingrix)

-

Shingles vaccination is the only way to protect against shingles and postherpetic neuralgia (PHN), the most common complication from shingles. CDC recommends that healthy adults 50 years and older get two doses of the shingles vaccine called Shingrix (recombinant zoster vaccine), separated by 2 to 6 months, to prevent shingles and the complications from the disease. Your doctor or pharmacist can give you Shingrix as a shot in your upper arm.

Shingrix provides strong protection against shingles and PHN. Two doses of Shingrix is more than 90% effective at preventing shingles and PHN. Protection stays above 85% for at least the first four years after you get vaccinated. Shingrix is the preferred vaccine, over Zostavax® (zoster vaccine live), a shingles vaccine in use since 2006.

Len

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Ask to see the vial for the vaccine you will get before they draw up your injection.

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Good, safe, idea.

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That's a darned good idea!

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Good morning all watching the sun rise over the over the sea in Lanzarote, but only just!

I too am waiting for Shingrix but let me share my recent Chickenpox/Shingles history in case it resonates with any one or just maybe helps. I visited my GP on 28/08 covered in spots that had appeared overnight. Looked like Chickenpox but as I have had it and no recent contact with the disease the GP diagnosed Impetigo and gave me antibiotics. After two painful days when it was obvious that the medication was not helping I was diagnosed with Chickenpox and given anti-viral medication, probably too late to be effective.

I recovered from the pox but was in considerable pain on the right hand side of my torso, back and front. This was combined with an enlarging de-sensitised area of skin on the front and side of my torso, right hand side,

My wife who had correctly diagnosed the pox came up with Post Herpetic Neuralgia as an explanation for my symptoms. The only problem being that PHN is a complication of Shingles. I saw two GPs who agreed with my wife but struggled to explain why I have PHN without having had Shingles. Their current hypothesis is that my CLL may have affected the way in which the Varicella virus presented; more of a continuum and combination rather than the text book polarities called Chickenpox and Shingles. My Haematologist is not so sure!

The first medication for PHN did not work and mentally we were cancelling this holiday. Different medication prescribed on Wednesday of last week is working and I was well enough to fly on Sunday. I was armed with a GP's letter explaining that I had recovered from the pox and was no longer infectious or more than usually dangerous. Just scarred all over my forehead!

All rather weird but will clamour for Shingrix when it eventually arrives in the UK, so that I minimise the chance of Shingles or PHN in future. No one will put a date on my recovery from the current PHN; weeks, months or never. So if in doubt, Shingrix.

Time to make coffee for my wife, have a great day,

Michael

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Hang in there Mike and make her that coffee (If Momma’s not happy, nobody’s happy). Things will get better.

Jeff

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You are of course absolutely correct!

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I had both shots for Shingrex, final one a week or so ago. First one made my arm hurt like the bajeesus, and feel sleepy for several days....second did not hurt nearly as bad at injection site and sleepy only for a day then fine. I checked my BP and heart rate this AM to make sure and I am definitely still alive.

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Scott & All: The fact that you had a topical reaction is GOOD NEWS since it assures that your Shingrix vaccination had 'taken' (the body recognized the new intruder and started creating the antibodies you need). In fact, <not having a reaction> should be a worrying outcome.

Caven

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Caven,

Yes, Cllcanada told me the same thing after the first shot....man, my hurt was so sore, the muscles where the injection was....but it stopped after a few days....

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This helps me realize the various possible reactions. Thank you.

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I have to wait a week then my GP will ring to discuss the shingrix jab. How? what? why ? who knows. Good job I keep an acyclovir scrip just in case.

I had an NHS tech check whether it was available on the NHS in the uk and he confirmed it was, through one's GP.

Bubnjay1

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Happy to repeat in case any new members have missed it.

Do not have a shingles jab..... you need the non live Shingrix one.

Bubnjay1

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