Shingles vaccine: Has anyone here has the shingles... - MPN Voice

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Shingles vaccine

Garstongal profile image
30 Replies

Has anyone here has the shingles vaccine? I know that the usual one is a live vaccine but the nurse at the surgery told me that there is a two-dose non-live one I could have if it didn’t compromise my condition. I do have a haematology phone appointment coming up but not for a few weeks yet so I wondered if anyone here could offer any insight?

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Garstongal profile image
Garstongal
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30 Replies
EPguy profile image
EPguy

I've had both vaxes. The old one (zostavax) has been found to not be durable. And on HU they usually advise against live vaxes. The new one (shingrix) is much more effective, and not a risk for HU patients. . It does hurt, and usually you'll feel it for a couple days after each. My Dr suggested getting it on the Friday to leave the weekend available in case it's hurting.

But it is a really good idea to get it if Dr approves. Anyone with possibility of Rux therapy especially should consider it, but it's good for all of us.

Garstongal profile image
Garstongal in reply to EPguy

Thank you very much for that information.

Exeter21 profile image
Exeter21

I asked for it & it was refused until70yrs old despite having ET .

Garstongal profile image
Garstongal in reply to Exeter21

I always thought that it was for over 70s anyway?

Exeter21 profile image
Exeter21 in reply to Garstongal

it also stated you could request it if you had an MPN. But they check health record to see if necessary 👍

EPguy profile image
EPguy in reply to Garstongal

My brother got shingles late 50s. In the US age 50 is the cut off, so his experience is consistent with the lower age recommendation used in the US.

PhysAssist profile image
PhysAssist in reply to EPguy

Hi,

I developed a pretty miserable case of Shingles [properly Herpes Zoster] in my early/mid 50's, but was told that I had to wait until I was over 6o years old in order to have it covered by my insurance.

I got the first dose last year, and the second with my influenza vaccination a couple of months ago. The flu shot was no problem, but that 2nd Shingrix shot was a beast- I had a very sore arm for over a week afterwards.

One of the concerns is that if you are too young when you get the vaccination, it may lose efficacy over time, so when you are older and most at risk you will be left unprotected. ...and thus far no one has thought to recommend any boosters at any age.

However, I suspect that if your doctor feels strongly that you need it sooner than the usual age [say because of an MNP, or the intent to prescribe Jakafi, as e.g.] they could write a letter to your insurer to get it approved pretty easily.

Best,

PA

For more information go to:

What Everyone Should Know about the Shingles Vaccine (Shingrix)

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

Ashburnmam profile image
Ashburnmam

I have been waiting for my surgery to get Shingrix in. Now 72 and had first does a month ago and no side effects except sore arm. Second dose 8 weeks later, about to book it soon. Well worth having

Garstongal profile image
Garstongal in reply to Ashburnmam

Thank you for your feedback.

Superwoman profile image
Superwoman

I had the first Shingrix jab back in April, I was really unwell for quite a few days afterwards.

I know that there are two jabs to this particular one, but I have not been asked to go back for the second dose, think it has to be a couple of months apart. And must not coincide with any covid jabs. So presume I have been lost in the system, not sure how important it is to get the second.

Just a tad fed up with all the jabs from five covid, one flu and one Shingrix, also needles being stuck in to take bloods.

Jean

Garstongal profile image
Garstongal in reply to Superwoman

Oh, I know the feeling! I’ve had six Covid jabs now, the 6th one I had alongside the flu vaccine, both in the same arm because I couldn’t face potentially not having the use of two arms. But all was well and thankfully I escaped all side effects. Not looking forward to having the double shingles jab after reading other people’s experiences, I must say…

EPguy profile image
EPguy in reply to Superwoman

I agree on all the needles, add to that for me the Besremi jab every two weeks.

Unfortunately the Shingrix needs two to work at its claimed effect. There is an informal study comparing one vs 2 doses, seems the big difference is over age 70. But the one dose study did not look for how long it lasts while the two dose was working still at 7 years later:

" 90.8%...(age over 50) and 69.5% (age over 70)."

publichealthmdc.com/documen...

--

Two doses, Shingrix was 91% effective in preventing shingles over age 50, ; 70 years and older, Shingrix was 89% effective.

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

PhysAssist profile image
PhysAssist in reply to EPguy

...and the time frame between each shot is a minimum, not maximum- as it turns out that vaccinations work best if you get the initial immune stimulation, and then wait until after the response has resolved completely, before getting the second one.

When the Hepatitis B vaccine initially came out, a lot of people thought that the time stated between vaccinations was the maximum, and people who got the 2nd and/or 3rd vaccinations too soon, ended up needing 1 and sometimes 2 more vaccinations.

I was [inadvertently] the poster child for leaving longer time frames than the minimum stated intervals between injections, as I changed jobs between the 1st and 2nd vaccinations, and again between the 2nd and 3rd, which ended up being about a 3-year course of immunizations, so of course, they questioned whether I had gotten a sufficient titer because it was pretty unheard of at the time.

When they checked my titer, they were pleasantly surprised to see that it was quite a bit higher than even the upper end of the bell curve.

The prolonged timeframe wasn't a big deal in terms of risk for the HBV vaccine because my only real risk was because of working in a primary care setting.

However, with the shingles vaccine, the possibility of Zoster reactivation is at best predictable, so going too far beyond the minimum required interval isn't necessarily a great idea.

Best,

PA

EPguy profile image
EPguy in reply to PhysAssist

Interesting on the longer interval and the "completely" criteria. That is quite specific and should be measurable.

I happened to use the max Shingrix spacing, good to know it's a +. I've read that the mRNA vaxes were set too close, esp the 3 week Pfizer.

Wewo01 profile image
Wewo01

I had the Shingrex vaccine earlier this year. I think the first one was January and the second was in March. The first one knocked me down for a couple days. I had low grade fever, fatigue and weakness. My arm was very sore and warm at the injection site. I had a goose egg for a week. The second one didn’t hit me as hard. Good luck!

Garstongal profile image
Garstongal in reply to Wewo01

Thank you for your feedback

Bluetop profile image
Bluetop

Yes, I have PV and am taking hydroxy. I had the 2 Shingrix jabs -but would suggest you pass it through your haem team.

Garstongal profile image
Garstongal in reply to Bluetop

Thank you for your input.

finlay2106 profile image
finlay2106

I'm on hydroxy, have PV, checked with haematology team who eventually said it has to be Shringrix (dead vaccine) once they remembered I'm on hydroxy. In the UK anyone is eligible for free vaccination on the NHS once they reach 70 (but don't rely on GP practice contacting you). And yes for Shingrix it's 2 doses, I was told the second had to be 6-8 weeks after the first. For me, no reaction whatsoever other than slightly sore arm for a little which is normal with vaccinations but others can have more reaction. I do suspect that the reaction is at least in part down to the technical skill of the person sticking the needle in you!

Check with your haematology team to get their ok first but a good idea to have it if they're happy. One of the recommendations in the 'Living with MPNs' conference yesterday was to have it. I understand the comments about lots of needles but what with blood tests every 8 weeks or so (in my case) plus the occasional venesection as well as Covid vaccinations what's another 2? I now try to say "sharp scratch" before the nurse does! Might be worth discussing the possible benefit of the pneumonia vacc with your haemo team/practice as well.

Garstongal profile image
Garstongal in reply to finlay2106

Thank you very much for that info. I have had the pneumonia vaccine already.

PhysAssist profile image
PhysAssist in reply to finlay2106

Hi Finlay,

Just a few comments:

1) A small technical detail is that Shingrix is a recombinant DNA vaccine rather than a "dead" vaccine, which implies a vaccine contains 'killed' [inactivated- since no one can agree if they are alive in the 1st place] viruses.

2) While skill at performing injections is a thing, it's usually limited to the immediate discomfort from the sharp pointy thing used to deliver the medicine.

It's not a determinant of whether or not you develop significant side-effects later, which are indicative of your [desired] immune system re-activation. The degree of reaction is likely more of function of your immune system's reactivity and also the degree of pre-existing immune function you had against the immunization's target organism [or virus].

3) I completely agree with your thought process about what 2 more injections mean on the scope of things, and in addition, people have to realize that in older adults [like a lot of us on here- myself included], H. Zoster AKA Shingles, isn't necessarily just a temporary albeit painful rash- the likelihood of post-herpetic neuralgia- a chronic and often lifelong [for the remainder of years any of us have left] nerve-pain syndrome increases directly with age.

See here:

Post-herpetic neuralgia: epidemiology, pathophysiology, and pain management pharmacology

"The frequency and severity of PHN increase with advancing age, occurring in 20% of people aged 60–65 years who have had acute HZ, and in more than 30% of people aged >80 years. In addition to age, risk factors for developing PHN after HZ include the presence of a prodrome (defined as pain and/or abnormal sensations before rash onset), severe rash (defined as >50 lesions: papules, vesicles, or crusted vesicles), and severe pain during the acute phase. A recent systematic review and meta-analysis also identified ophthalmic involvement as a risk factor. Additional possible risk factors included systemic diseases including systemic lupus erythematosus, diabetes, and recent trauma. Immunocompromised patients are at increased risk of VZV reactivation as well as neurological complications."

ncbi.nlm.nih.gov/pmc/articl...

Best,

PA

finlay2106 profile image
finlay2106 in reply to PhysAssist

Hi PA,

Thanks for the very precise clarifications. Sorry for delay in replying but I've stopped receiving daily summary of postings to Health Unlocked. Don't know why but am trying to sort out.

PhysAssist profile image
PhysAssist in reply to finlay2106

de nada!

EPguy profile image
EPguy in reply to finlay2106

My email notices of Alerts started going to a "bulk" folder, maybe yours is going to a similar strange place.

finlay2106 profile image
finlay2106 in reply to EPguy

Hi EPguy,

No nothing like that, I just wasn't getting the daily summaries sent to me. I sent a message to HealthUnlocked and got a reply back saying it should work now. It did but they gave no explanation as to what had happened or what had been changed. Likely something behind the scenes at their end as I'd done nothing to my settings and nothing had changed with my systems. Maybe someone somewhere tweaked something that they shouldn't have!

PhysAssist profile image
PhysAssist in reply to finlay2106

Hi Finlay,

Ironically, this [my] reply came so late because all of my emails from MPN Voice, and Health Unlocked had ceased to arrive, so I came looking to see why they had.

You're of course, welcome and I look forward to hearing how you make out with it.

Best,

Thomas

JeanieRN profile image
JeanieRN

Hi, I am 52 and had my series of shingles vac. 2 shots 6 -weeks apart. I did fine!

KentBee profile image
KentBee

Hi, I had the Shingrix first vaccine a couple of weeks ago and got the following up one booked. I had a sore arm for about a week and felt like my glands were up the day after but all fine now. After seeing the poor chap on this site who had Shingles in his eye it inspired me to see if my gp could source the vaccine, they did and quickly sorted.

SRH55 profile image
SRH55

Hi,

I had my shingles jab 2 days ago & have to have the second one in 2 months. My haematologist said I needed to have it because I’ve started taking Ruxolitinib & will be more prone to shingles. I had shingrix & haven’t had any side effects from it - so far.

Best wishes,

Shirley

Solyesh profile image
Solyesh

Had Shringrix last year (52). 1st dose did make me feel like I had a bad case of the flu - took it on a Friday to give me weekend to recover. Second dose was not as bad. Having seen friends suffer from shingles -definitely worth it!

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