Should I have the shingles vaccination: I know this... - PMRGCAuk

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Should I have the shingles vaccination

Mama48 profile image
40 Replies

I know this has been discussed before, I have recently reached that significant age and I reckon I will be offered the shingles vaccine when I go for my flu vaccine.

I have managed to come off Prednisolone and am coping quite well, l vaguely recollect reading that it might not be advisable to have the shingles vaccine when suffering from an autoimmune disease. As I am supposedly recovered would it be sensible to have it? I’d welcome some advice. Thanks Mary

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Mama48 profile image
Mama48
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40 Replies
HeronNS profile image
HeronNS

You should make sure it is the new version, Shingrix, which is made from killed virus. Not only is it less likely to possibly trigger shingles, but so far it appears to be much more effective and retains its effectiveness longer. Be warned, my husband had this shot and felt very fluey for about 24 hours. I don't get shingles vaccines as there's no evidence I ever had chicken pox.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

It all depends whether it’s the older version (Zostavax), which is a live vaccine -and according to manufactures paperwork can trigger PMR- not recommended, I declined last winter having recovered from GCA.

There is a newer version (Shingrix) which is not live, and should therefore not trigger PMR. But apparently it causes more side effects.

But, whatever it’s your choice.

SnazzyD profile image
SnazzyD in reply to DorsetLady

From what I have gathered from reading, one way to make a vaccine more effective is make the immune system more frisky so it reacts more to the organism. To do this more adjuvants are put in which give you side effects. To me, anything that makes the immune system overreact makes me nervous.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SnazzyD

Quite agree, that's why I declined it last year. No doubt I shall have the same argument this year when the flu jab season comes around again.

HeronNS profile image
HeronNS

Read the other day that Zostavax is only about 50% effective as compared with something like 97% for Shingrix. And Zostavax becomes less effective over a few years, whereas so far Shingrix maintains its effectiveness quite well. Both of them do decline over time although they are both supposed to be one time only vaccinations (Shingrix requires two shots, however).

Marymon profile image
Marymon

I had Zostavax injection end February, I came out in a rash down the opposite side of my arm, back and hip. As this faded, I developed all the PMR. symptoms, full blown a month later.

Without boring you with the details, I told my GP at the time I believed it caused the PMR. he wouldn't have it, but researching I discovered MERCK in US are being used for causing shingles.

So make sure if you do have an injection it is Shringrix, NOT Zostavax.

SnazzyD profile image
SnazzyD in reply to Marymon

You’ll find virtually no doctors will link problems with vaccines, which may be why reporting of side effects and thus data is so unreliable, according to those who call for better research.

Marymon profile image
Marymon in reply to SnazzyD

Neither do they want to take responsibility for the side effects, the patient has to live with.

But of course, they are only following NICE, as I was told, and you mustn’t believe what you read on the internet.😖😖😖😖😖

So where do we stand ????, only on one foot that’s for sure.

Patient beware, should be a notice in surgeries.

That said, mustn’t brand all docs as ostriches, just useless ones stick in the throat, all that sand they try to blow in our eyes 😤😤😤

SnazzyD profile image
SnazzyD in reply to Marymon

To a certain extent it isn’t their fault. I had to have mandatory vaccine training annually. The simplistic black and white, yet rose tinted information was given out and any discussion or anecdotes to the contrary were stamped out. Those giving out the info didn’t see any different, not even to discuss patients who just might be affected adversely. The only adverse reaction recognised was anaphylaxis as with all medicines. What used to drive me nuts at the back clamping my mouth shut was the attitude that you either took in all on unquestioningly or you were anti vaccine. I was either.

Marymon profile image
Marymon in reply to SnazzyD

Either or neither ??

SnazzyD profile image
SnazzyD in reply to Marymon

Whoops! Neither

Marymon profile image
Marymon in reply to SnazzyD

🤭😀 thought so x

PMRpro profile image
PMRproAmbassador in reply to Marymon

I'm fairly happy to accept what I find on the internet when it is the data sheet issued by the manufacturer! Or the clinical trial documentation that has been put out for general consumption.

We have the anti-vaccine clowns crusading here in Italy at the moment - suppose they have been all over Europe since we now have in excess of 40,000 cases of measles in the system. So some will find out the hard way that measles isn't just a harmless childhood illness - it kills.

Marymon profile image
Marymon in reply to PMRpro

On BBC news today said rise of measles in Italy, showed child being vaccinated, and mother saying she wouldn’t have had it done, except schools wouldn’t accept them unless they had the vac. Clip of child with full blown measles.☹️

Politician, Silvano?? waving arms shouting if elected would abolish the rule.🤨.

After all the years we have been without it.

It seems to be the fashion for politicians without policies to fall back on reversing previous ones.

Clowns they are, the biggest one across the Atlantic.

PMRpro profile image
PMRproAmbassador in reply to Marymon

Apparently some of the fake news has been propagating that AW was found to be vindicated in his claims and that the Lancet had apologised. No he hasn't, no they haven't - but his following in the USA and other places has really taken off.

Don't think Silvano what's'is'name has managed it yet. Hope he doesn't.

Mama48 profile image
Mama48

Thank you for your comments, if I do decide to have it it’ll certainly be Shringrix

SheffieldJane profile image
SheffieldJane

If you look to your right you will see the previous threads discussing this topic. I think the advice was no but I can’t remember.

Mombeck67 profile image
Mombeck67

Please read this article that I am linking. Shingrix has not been tested on any patients with autoimmune disease nor do they recommend it for them. It uses a brand new adjuvant which stimulates the immune system and could make our autoimmune disease much worse! Please show your doctor this article and discuss it.

medpagetoday.com/meetingcov...

yogabonnie profile image
yogabonnie in reply to Mombeck67

/Thanks for this article. It answers my question I just asked somewhere else.. NO! I will not have it. I am bringing this article to the doc.

Mombeck67 profile image
Mombeck67

Quote: This vaccine (Shingrix) has been studied in HIV patients, cancer patients, and transplantation patients, and the patients did fine, she said. "But our concern is kicking up the immune system in autoimmune patients who already have an overactive immune system," she said.

karools16 profile image
karools16 in reply to Mombeck67

Interesting comments re; shingles vaccine. I am due to have 1 next week and hadn't given it a thought. Will now discuss with GP when I see him on Friday.

PMRpro profile image
PMRproAmbassador

Shingrix isn't yet available in Europe as far as I know - and I wouldn't have it until there is more experience of using it in patients with compromised immune systems. All the areas it has been studied in are in people with heavily suppressed immune systems - and to be honest, if it can develop an immune response that prevents shingles I would like to know a LOT more about it being used in people with overactive immune systems! Even though we are on pred the immune suppression isn't that heavy.

Mama48 profile image
Mama48 in reply to PMRpro

Thank you all, I think I’ll say no!

karools16 profile image
karools16 in reply to PMRpro

Mmmm...this has really got me thinking now. Not as straightforward as I imagined. I may also cancel after appt dr Fri.

piglette profile image
piglette in reply to PMRpro

I saw a press release earlier this year from GSK saying they had approval for Shingrix in Europe and Japan and it was the best thing since sliced bread!

PMRpro profile image
PMRproAmbassador in reply to piglette

Like Fosamax and Vioxx and Prolia and ... ????

yogabonnie profile image
yogabonnie in reply to PMRpro

where is the love button. well said!

HeronNS profile image
HeronNS

To be honest, one thing I've read is that people being treated for auto immune diseases are less likely to mount as effective an immune response as otherwise, because their immune system is being damped down by medication. So you weigh your risks. Refuse the vaccination which may leave yourself more vulnerable to shingles attacks, which may or may not ever happen, chance a vicious reaction to the vaccine which will make you feel ill for a day or two, but protect you from shingles, or get the vaccine and still not react sufficiently strongly to get the full immunity because you take an immunosuppressant. Hobson's choice?

karools16 profile image
karools16 in reply to HeronNS

I have had chickenpox twice. Once as a child, and once as an adult.Shingles seems absolutely ghastly, according to people I have spoken to, in our small town. On second thoughts, maybe have it after all. You have made it crystal clear, whan you spell it out like that. Thank you.

PMRpro profile image
PMRproAmbassador in reply to karools16

If it is the original one, Zostavax, one of its potential adverse effects is shingles! As you say - not so simple. A lot depends also on age - it works best in healthy people in their late 50s and early 60s. As you get older it becomes steadily less effective - because the immune system declines with age.

karools16 profile image
karools16 in reply to PMRpro

It's been advertised on our local radio for the 70 and overs. Also advertised, for over 70, at the local surgery. I vaguely recall that if you are on Warfarin, you should avoid contact with anyone who has/had shingles, recently?

PMRpro profile image
PMRproAmbassador in reply to karools16

Oh I know - when the NHS started playing catch-up they started with the oldest patients. For whom it probably makes next to no difference looking at the clinical trial figures.

Wonder if that includes any other anticogulant therapies? Loads of people now are on NOACs - a very different kettle of fish but still anticoagulants.

HeronNS profile image
HeronNS in reply to karools16

I am thinking I should have the chicken pox test to find out my status.

karools16 profile image
karools16 in reply to HeronNS

The plot thickens! Now I am going into over drive. Will it affect my Addison's Disease?

HeronNS profile image
HeronNS in reply to karools16

You need to consult with someone I think. The recommendations for shingles vaccination stipulate "healthy" adults but the list of contraindications is very short.

karools16 profile image
karools16 in reply to HeronNS

No, am not in healthy category...yet. Will ask GP Fri. Thanks.

Marymon profile image
Marymon in reply to HeronNS

I understood that you can get shingles a second time. Just not so severe, in fact happened to a friend.

A conundrum.

PMRpro profile image
PMRproAmbassador in reply to Marymon

You can't "get" shingles as such. Shingles is due to the chicken pox virus having become dormant in nerve endings in the body. At some point it wakes up and causes shingles - it isn't a new infection. Then it becomes dormant again - and may remain dormant forever or it can wake up again and you can have the symptoms of shingles again. It can happen multiple times if you are unlucky - especially if you have a compromised immune system.

Marymon profile image
Marymon in reply to PMRpro

Gets even better, 😫😫

HeronNS profile image
HeronNS

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

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