About live shingles shot: I have been reading all... - PMRGCAuk

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About live shingles shot

Linny3
Linny3

I have been reading all about the problems with the live shingles vaccine shot. I had the live shot and three months or so later I was diagnosed with PMR. No one told me about that being a side effect. I have had pmr for over 3 years and can't get below 12mg. I am wondering if the vaccine is still active and causing me to have this problem with decreasing the pred? I couldn't find anything on the subject and wondered if anyone has read anything about it. No point in asking the dr. he will just roll his eyes at me.

Now they want me to have the new vaccine. Also, they want my husband to get the vaccine and I am really scared for him. We don't need two people with pmr in the family.

48 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

You only need vaccine once according to nhs link attached- please read through all the links. nhs.uk/conditions/vaccinati...

Info should be global.

Live vaccine - Zostavax - which is probably what you had,

and newer - Shringrix which is not live.

Linny3
Linny3 in reply to DorsetLady

They have amended that here in the US. They say it won't last 5 years. I had an awful time with the live shot. Got shingles twice and was sick. Luckily they were mild cases.

PMRpro
PMRproAmbassador

They are still saying the new one is OK - though if they told the truth, they can't know. It hasn't been trialed in patients with autoimmune disorders and there are some experts who have expressed concern about the strength of the effect on the immune system and what it potentially could do to an already deranged system.

I'd certainly be wanting to know why they want you to have a second vaccine anyway. You are in the US I assume as it isn't available in the UK on the NHS yet - so I would wonder what financial incentive THEY have. But then, I'm very cynical ...

Linny3
Linny3 in reply to PMRpro

I was told the live vaccine isn't covering like they thought and It won't continue to cover me for the shingles. Don't know when the coverage will stop. That's why I was wondering, if I am having so much trouble with the pmr because the cause (live vaccine) is still in me.

HeronNS
HeronNS in reply to Linny3

This states Zostavax lasts about five years:

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

Linny3
Linny3 in reply to HeronNS

So I wonder, if pmr was started by this will the pmr end after the 5 year mark?

Hmmm

HeronNS
HeronNS in reply to Linny3

You could be a case study. 😏

HeronNS
HeronNS in reply to Linny3

Thing is, vaccines trigger the immune system to produce antibodies. So the actual vaccine is long gone, isn't it? I don't really know. It's the effects it produced. I wonder if there have been any studies of people who seem to have developed PMR after getting vaccinations?

Linny3
Linny3 in reply to HeronNS

something must still be at work if it is good for 5years

PMRpro
PMRproAmbassador in reply to Linny3

The antibodies - and the immune system's memory: because it has met it before it is able to produce more of them quicker. That's why you can still get flu but it should be milder or over quicker.

Rimmy
Rimmy in reply to PMRpro

I 'like' the term 'deranged immune system' - which I think I will now consciously adopt - it seems to suit exactly and is a valuable (if not specifically 'scientific') reference point for what we might or might not do to either 'insult' our bodies even further or maybe rescue them from the next onslaught of sommat else ! So despite the fact there seems to be little question that the pneumonia vax is not 'live' (and I realise it will not save from the variety possibly initiated by the coronavirus) I have been pondering getting one as they are recommended for over 65s in OZ and are dished out for free. As I am currently still on a return high dose of Pred (still 32.5mg) after a month of GCA relapse I wonder if this is good timing anyway with the renewed derangements I am currently experiencing. Regardless I am going to the doctor in a couple of days to get lots of forward scripts if he will give them to me - to stay out of circulation of public venues especially surgeries/chemists etc as much as possible in the next few weeks until this whatever we would call it 'panicky' period is 'over (if 'ever'). Should I get this shot now or not as I will likely also need the next flu vax for our 'regular' forthcoming season in April ?

PS - Sorry I didn't mean to 'hijack' this question re the shingles vaxes but interested in opinions on this as well - thanks !

PMRpro
PMRproAmbassador in reply to Rimmy

You can have both at the same visit - but not both pneumonia vaccines.

cdc.gov/features/adult-pneu...

Hidden
Hidden in reply to Rimmy

I used to think my immune system was deranged...

Deranged:

throw (something) into confusion; cause to act irregularly--- "stress deranges the immune system"

Now I think my immune system is demented ...

Demented:

An adjective describing behavior that is crazy, unhinged, or insane. Demented is when it has gone off the deep end.

Bridge31
Bridge31 in reply to PMRpro

Ah ... deranged ! What an apt word for us all 🙃🙃🙃

You hit it on the head as usual, PMPro! I am in the US and even with good insurance, they want $142 US ($111 British) each for the two shots!

I had a mild case of shingles 15 years ago and was slightly scarred but not really interested in the new shot.

Shingrix is supposed to be something like 90% effective, unlike Zostavax which has a much lower effectiveness. Apparently, although they say the vaccine is good for life, it does gradually lose effectiveness. I would have thought three years was too soon for you to need it again, ten years sounds more like it. If I come across where I read this again I'll post it. Your husband should get Shingrix, not Zostavax. My husband had Shingrix. It did make him feel rotten for a day, and the second shot seemed worse than the first, but after that was over he was completely recovered, no residual effects.

HeronNS
HeronNS in reply to HeronNS

This item actually suggests that people who have been vaccinated with Zostavax should be revaccinated with Shingrix to provide greater protection, no particular time mentioned to wait if you have had the earlier vaccine.

drugs.com/medical-answers/d...

Linny3
Linny3 in reply to HeronNS

found article that said wait at least 8 weeks.

HeronNS
HeronNS in reply to Linny3

Eight weeks after Zostavax? Then that patient would have been given Zostavax by mistake I think! You wouldn't need Zostavax if you were getting Shingrix. I know there is a wait of two to six months between the first shot of Shingrix and the second. Is that what you meant? In my reply to you I had been referring to the fact that you had already had Zostavax three years ago and I didn't know if there was any problem having the second vaccine soon, and apparently there isn't.

Linny3
Linny3 in reply to HeronNS

If a person wanted to have shingrix after taking the live vaccine, they needed to wait 8 weeks. That is what it said. Don't know why a person would do that?

HeronNS
HeronNS in reply to Linny3

Okay! I did wonder. No way would I have two different vaccines for the exact same thing.... :D

Linny3
Linny3 in reply to HeronNS

you didn't worry your husband could contract pmr with the new shot?

HeronNS
HeronNS in reply to Linny3

Of course not. :D

HeronNS
HeronNS in reply to Linny3

I had not allowed him to have Zostavax as there is a chance I've never had chicken pox and I felt that would put me at risk. I don't think Shingrix has been around long enough for us to know what unintended consequences there may be, but where it is a killed virus I suspect those will not be as serious or likely as with the live version. But who knows? As far as I know shingles is extremely unpleasant and probably worth the risk to have the vaccine.

readingbooks
readingbooks in reply to HeronNS

I wasn't sure if I had had chicken pox either, but you can have a blood test for antibodies to check. . My test showed I hadn't.

HeronNS
HeronNS in reply to readingbooks

I know, I keep forgetting to ask and hardly ever see my doctor these days anyway. Will make a list for next visit!

Your husband can say No if he wants. I was pressured into having one and bitterly regret it now. Pmr started 2 weeks after the jab and a normal annual blood test. Then whoosh.. Raving high bloods, pain everywhere and enter pmr 4 years ago. My husband flatly refuses all jabs and the surgery now leave him alone.

Hi Linny! I also had the shingles vaccination early last year and three months later presented with PMR. However auto immune is in my family. My Mum had polymyositis and our son is type 1 Diabetic.

My husband had Shingles some years ago —- it was very painful and the neuralgia lasted for two years. Having said that , I certainly would not repeat a shingles vac!

HeronNS
HeronNS in reply to Smokeygirl

Which vaccination did you receive? Now that there are two very different versions available and Shingrix will become more widely used, I think it's helpful to be specific as it helps those of us who are deciding what to do. Thanks.

Smokeygirl
Smokeygirl in reply to HeronNS

It was Zostavax. I had chicken pox as a child. x

HeronNS
HeronNS in reply to Smokeygirl

Okay. I wonder how long it will be before Zostavax is phased out and experiences like yours hopefully become much more rare.

PMRpro
PMRproAmbassador in reply to HeronNS

Once the manufacture of Shingrix catches up - under the current circumstances, maybe a while

HeronNS
HeronNS in reply to PMRpro

gskpro.com/en-us/products/s...

PMRpro
PMRproAmbassador in reply to HeronNS

That's from last year - before Covid19 and China's shutdown. And they supply vast amount of raw materials to the rest of the pharmaceutical industry.

HeronNS
HeronNS in reply to PMRpro

It was all I could find. I tried to get info for Canada (I think this is USA) and 2020, but I did think it was interesting that the manufacturer had so seriously underestimated the potential demand and they explained it takes something like eight months to get a batch of vaccine ready. I had no idea. A whole other world!

HeronNS
HeronNS in reply to HeronNS

bioprocessintl.com/bioproce...

manufactured in Belgium?

PMRpro
PMRproAmbassador in reply to HeronNS

It is the raw material supply that also is involved.

HeronNS
HeronNS in reply to PMRpro

Downsides of globalization?

PMRpro
PMRproAmbassador in reply to HeronNS

One way of looking at it yes! And once you are dependent on a limited source (number not capacity) it doesn't take much to mess it up whether it is politics or anything else.

Hidden
Hidden in reply to HeronNS

More the just in time manufacturering. Once explorers went and gather raw materials that became central to western lives hundreds of years ago and traded......

PMRpro
PMRproAmbassador in reply to HeronNS

8 months is pretty speedy! Depends on the technique of course.

I wouldn’t recommend Zostavax , I received it and developed PMR. Doctors should inform patients of the serious side effects on the manufacturers online information. Having said that my surgery were totally unaware and said it was up to the nurses .

Don’t do it !

I'm sorry if I come over all flowing skirts and vegetarian sandals here - and this question is addressed to the wider readership on this forum, not pointed directly at you Linny3 - but isn't shingles related to a deficit of vitamins - is it the B group? Are there not some preventative measures that could eliminate the need for the vaccine or at least reduce the severity of the body's reaction to the infection (and maybe to the vaccine)?

PMRpro
PMRproAmbassador in reply to Hildalew

Yes and no - there is evidence that being B12 deficient may increase the risk of you developing shingles but it isn't the cause.

After having chicken pox the virus doesn't entirely leave the body - it retreats into nerve endings, especially in certain areas which provide the typical locations of shingles. Most common is around the waist, usually unilaterally, which is where the German name for shingles is derived: Gurtelrosa, Pink belt. Something causes the virus to emerge from hibernation and cause the typical signs and symptoms. If you haven't had CP, you can't develop shingles, you can't catch it from someone although theoretically (though rarely practically) you can catch CP after contact with the shingles rash.

winchesterhospital.org/heal...

makes various suggestions for natural approaches to managing shingles.

In 2003 a letter to the BMJ from a retired doctor in Singapore

bmj.com/rapid-response/2011...

refers to early treatment in primary care being essential as mentioned in this article:

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

and goes on to assert that administration of B12 injections improves the pain by preventing the demyelination of the nerves which is what causes the pain. But I can find no confirmation of the approach - it is purely anecdotal although B12 has been a traditional treatment for shingles in the days before antiviral drugs.

I live in the US and had the first generation shingles shot about 8 yrs ago (approx. 2012). Had the most recent generation (asserted to be 94+% effective) shingles shot; including first shot in Oct 2019 and second shot in Feb 2020. Diagnosed with PMR in Dec 2018. The next generation shingles shots have had no impact on my PMR.

All I can say is prednisolone reactivated shingles in me and it has not been good.I hope they can get on top of it.

I refused mine, at least until this PMR thing is resolved...

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