Shingles vaccine: People in the uk, don't shoot me... - PMRGCAuk

PMRGCAuk

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Shingles vaccine

HeronNS profile image

People in the uk, don't shoot me. Instead, lobby the nhs to cover the Shingrix vaccine which is over 90% effective, and much more effective in older people than Zostavax. Also because it is not a live vaccine it is more appropriate for people on immune suppressing medication. If in the US you can only get Shingrix. In Canada both are available. Opt for Shingrix.

I had my first Shingrix vaccination yesterday. I was actually very worried about side effects. Well. A few hours after getting it I felt really fatigued. You all know what that's like. Sensing it was only going to get worse, although it was still quite early in the evening I got ready for bed. Ended up sleeping all evening as the thought of reading or even watching tv was too much for me. I woke in the morning with pains no worse than a minor PMR flare, which have been improving all day. (I'm currently on 5.5 mg pred, tapering at medium speed from a severe flare earlier in the year.)

I did find I was very thirsty yesterday, and also regretted the rather large supper I'd had, but wasn't sick or anything. Just got comfy in an easy chair and nodded off until it was time to go to bed properly.

53 Replies

Thank you for sharing. I need to check as I may have had the shingles vaccine before I started on biologic treatment for my RA

HeronNS profile image
HeronNS in reply to Mistydawn

In the UK you can't yet get Shingrix (except privately and it's expensive|). However it's worth knowing that there's nothing to prevent a person from having Shingrix in the future even if they had Zostavax in the past.

You’ve just reminded me, Thankyou! I had a letter from my GP as my records said I hadn’t had a shingles jab. Last time it was mentioned, a couple or so years ago I was advised against it because of having a weakened immune system and was on steroids at the time. I must admit that I’m apprehensive due to my various conditions. I live in the UK too, but I wasn’t aware of different vaccines for shingles .

HeronNS profile image
HeronNS in reply to ClarkB

That's another reason Shingrix is preferable. Unlike Zostavax it isn't a live vaccine. You may still be advised not to have a live vaccine unless there's a compelling reason why you need it. Years ago when I thought I'd never had chickenpox (had to have a blood test to find out that I must have at some point, although no one noticed, including my medically trained family and myself) and I wouldn't let hubby have Zostavax because I thought it might put me at risk of getting chicken pox. I think Zostavax has been implicted in actually causing shingles in some, and triggering PMR symptoms. So all in all probably to be avoided if possible.

ClarkB profile image
ClarkB in reply to HeronNS

Thankyou for explaining Heron, as I become overwhelmed! I will bear in mind what you said when I contact the surgery. Currently, like other people on this site, I have several conditions and tend to prioritise the one that’s giving the most discomfort at the time. This is probably why it had slipped my mind about getting a shingles jab. With current conditions causing me problems, I find myself concerned about possible side effects. I know that catching shingles is worse, but I do tend to suffer them. I had chickenpox as a child apparently.

HeronNS profile image
HeronNS in reply to ClarkB

If you'v already had shingles I think it makes sense to get whatever vaccine is offered to you. Talk about it with your doctor.

ClarkB profile image
ClarkB in reply to HeronNS

I haven’t had shingles. I just received a letter from GP saying that I hadn’t had the vaccine.

HeronNS profile image
HeronNS in reply to ClarkB

Then do as I did for a couple of years while I made up my mind, be aware of the existence of antiviral treatment which if given early enough can, so I've heard, be very effective at warding off the worst symptoms and shortening duration of attack. Our pharmacies are allowed to prescribe this which deals with the doctor shortage or inaccessibility.

ClarkB profile image
ClarkB in reply to HeronNS

I will bear this in mind. Thankyou, I hadn’t felt well for the last couple of days, hence late reply. My mind was befuddled so put off thinking about it. It’s difficult to think about having a jab with possible side effects, whilst at the same time feeling unwell. Think it might be caused by a diverticulitis flare up too. Who knows! It all becomes confusing when you suffer from several conditions.I want to absorb the information you and others give on shingles vaccines before I phone the Practice, and am ticked off their list. Choice might not come into it!

I do appreciate every suggestion and piece of advice that is given on this site, when people are suffering with their own conditions.

HeronNS profile image
HeronNS in reply to ClarkB

I am 74. I had put off getting a shingles shot for years. Then somwhow all the talk of vaccinations this year loosened my resistance, although I still would never consider the old vaccine Zostavax. Take your time. You'll know if and when it is right for you. It's not like something to prevent the spread of an infectious disease which is important to maintain public health, or a deadly disease like tetanus. And most people will never develop shingles anyway, although I have read the incidence is increasing.

ClarkB profile image
ClarkB in reply to HeronNS

Thankyou for your suggestion Heron.I am currently not well with other health issues and so had pushed the shingles vaccine to the back burner as I try to deal with them. Everything happening at once, including having to make a decision on teeth implants, and alternatives due to a failed bridge, a lengthy procedure if I go ahead. With feeling unwell anyway, my long awaited appointment next week is not what I need right now. Yesterday I had to cancel a physio appointment for the same reason, and my next available one is in September! Some of us have multiple health issues, and I find I have to prioritise the one giving the most trouble at the time! Which to discuss if I manage to get a 10 minute phone call with a doctor? I wish I had the knowledge of many of you on this forum, I understand very little on health matters. Meanwhile, my friend rang me and was telling me of her mother’s bad experience with shingles.....

HeronNS profile image
HeronNS in reply to ClarkB

I hear you, especially about that 10 minutes (max) on the phone with the doctor! I hope you're feeling better soon and more able to cope. Tough having a number of things to deal with.

Very helpful thank you.

Having read up on both vaccines I can't imagine why Zostavax is still being offered. Reason is no doubt to do with money, but still....

Just found this - more than you ever wanted to know!

immunize.org/askexperts/exp...

nuigini profile image
nuigini in reply to HeronNS

I'm so apprehensive about getting Shingrix because it took years for them to acknowledge that one of the side effects of Zostavax was PMR. The following section in the link you shared did nothing to encourage me....

..Should zoster vaccine be given to a person who is currently receiving immunosuppressive treatment?

Immunosuppression is not included as a contraindication in the manufacturers' package insert. However, immunocompromised people and those on moderate to high doses of immunosuppressive therapy were excluded from the clinical efficacy studies so data were lacking on efficacy and safety in this group at the time of licensure. ACIP has not yet made a recommendation regarding the use of Shingrix in these patients, but is anticipated to do so in the future.

PMRpro profile image
PMRproAmbassador in reply to nuigini

I have heard that some immunologists are concerned about the effect of a vaccine that encourages such a strong response on deranged immune systems.

HeronNS profile image
HeronNS in reply to nuigini

This is why I thought I would post my experience. Unless something longterm is brewing, my experience appears to have been less of a problem than that of my non-immunocompromised hubby. Which may mean nothing more than a lower immune response. But as Shingrix can be about 97% effective after the second dose I think even a partial response is going to be more effective than Zostavax usually is. And way better than even mild shingles appears to be.

HeronNS profile image
HeronNS in reply to nuigini

I note it says "moderate to high" doses of immunosuppressive therapy was a criterion for exclusion. This sounds like those on low dose were not excluded. Anyway, I have survived. Very painful arm for a few days, and overall uncomfortable arms, neck and shoulders, which was a heightening of a longstanding problem. How much was Shingrix? How much was osteoarthritis? Was any of it PMR? Impossible to know, but it wasn't so bad that I won't get my second shot within the next few months. Except for those first few hours of complete collapse and falling asleep, I had no strange reactions.

nuigini profile image
nuigini in reply to HeronNS

It can be all too confusing at times! Hope you continue to do well.

Thanks again. We do increasingly, have to be our own advocates.

Thanks for this, it really jogged my memory and I put it on my list of questions for the Doctor. Back in 2018, I got the first shot and the pharmacy never got a sufficient supply of the second phase. Enter GCA and shingles in 2019~face, mouth and nose~~so I'm anxious to get it if I can.💖 In the US, I think I pay $144 and insurance pays the rest. 🤞🏻💉

Hey! Not to be a Debbie downer, I’m not and this is the only time I’ve ever had to send a cautionary note on this type of thing. The Shingrix vaccine is compex I’d say. I’ve never had a bad reaction to anything (meds, etc all good) and this put me in bed the way people describe COVID for a full week. My rheumie had me add a round of high dose prednisone to the second shot which both reduces efficacy, but did also reduce the side effects. She’s a top rheumie at Stanford and basically said 5 of her 8 patients who got Shingrix had serious side effects and one was hospitalized. Folks like us weren’t included in the clinical trials. Bottom line - I knew a lot of people who had this vaccine and were ok or had very minor side effects. But, many did not. So just be aware. My mom with RA had it with minimal side effects (but then she takes 10mg prednisone a day to just keep going with RA) and got shingles anyway several years later. Again, I’m not normally “that person” in my responses, but talking to my rheumie about so many of her patients having issues was interesting.

HeronNS profile image
HeronNS in reply to HanaleiBa

Fair enough. I posted because I had read so much about the serious reactions I had to ask the pharmacist to talk me back into having it! Not having anything worse than overwhelming fatigue and a bit of the type of pain I'm all too used to anyway, and having it all over in less than two days (feel fine this morning) was very encouraging. I guess you must be the person I read about in the list of possible side effects, and I'm sorry this happened to you. The pharmacist actually said to me that my husband's reaction was the worst that she had heard from any of her customers, so nothing like yours.

I’m booked in for a Zoledronate infusion today and shingles vaccination tomorrow Does anyone know if they will conflict please with PMR or the Prednisolone?

Many thanks in advance 🤔

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to AnniesRyder5

Zoledronate infusion okay, but I would pass on the shingles vaccine - as you are in UK it’s likely to be Zostavax which is a live vaccine.

What would the likely repercussions be please? I plan to contact my GP later with the information Thank you very much - again!👍

PMRpro profile image
PMRproAmbassador in reply to AnniesRyder5

It could actually cause shingles - and PMR is listed as a potential adverse effect.

There are several posts about the Zostavax vaccine - look at the related posts including

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

AnniesRyder5 profile image
AnniesRyder5 in reply to PMRpro

Thank you so much and for sparing me potential health problems 👍

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to AnniesRyder5

This is advice from nhs -

2. What you need to know before you receive ZOSTAVAX

Do not receive ZOSTAVAX

• if you are allergic to any of the components of this vaccine (including neomycin (which may be present as trace residue) or any of the other ingredients listed in section 6)

• if you have a blood disorder or any type of cancer that weakens your immune system

if you have been told by your doctor that you have a weakened immune system as a result of a

disease, medicines, or other treatment

• if you have active untreated tuberculosis

Taking Pred means your immune system is compromised

bussell profile image
bussell in reply to AnniesRyder5

Zolendronate vaccine two months ago had no after effects on me at all. All good. By the way I never had chicken pox as a child or young mother despite lots of contact, does that mean that I am in the clear regarding shingles? Now 81 and fingers still crossed....

PMRpro profile image
PMRproAmbassador in reply to bussell

If you really never had CP then you cannot develop shingles - it is a reactivation of the dormant virus in the nerve endings.

bussell profile image
bussell in reply to PMRpro

Thank you PMRpro. That's what I thought, but good to have it confirmed. Sunshine here today after biblical rain. Hope it's shining on you too.

PMRpro profile image
PMRproAmbassador in reply to bussell

Mind you - lots of people THINK they never had it - but had it so mildly they never noticed.

HeronNS profile image
HeronNS in reply to bussell

I was exactly like you, including children in the house with CP. Then I got tested, and I did have CP at some point in my life. One of my children showed no signs of it, although both his brother and his sister had it, interestingly at different times, years apart. In fact the boys were still young enough to be bathing together when one of them developed the CP spots. So I warned him he's probably like me and had a subclinical case.

bussell profile image
bussell in reply to HeronNS

How interesting. well maybe I have had CP after all. I've never been offered the shingles vaccine nor an offer of testing. Think I'll let sleeping dogs lie! Even my grandchildren are pretty much past the CP likelihood now.

PMRpro profile image
PMRproAmbassador in reply to bussell

Never too old - my brother didn't have it as a child, didn't catch it when our daughter developed it while at his - but caught it from a colleague at work!! He must have been well over 30, he must have been 30 when our daughter had it and it was several years later.

HeronNS profile image
HeronNS in reply to bussell

I'm actually glad to have had the test because it does mean I don't have to be worried anytime chicken pox is in my world - at least in non-pandemic times. Chicken pox is really serious for adults. Btw, in my reading about Shingrix a couple of days ago I learned that it is safe to be given to people who believe they have not had chicken pox. However it's thought that 99% of ppl over a certain age (I suppose pre-CP vaccine years) have had chicken pox even if they are like you and me. You would not want to have Zostavax without knowing, however, as it is a live vaccine.

At my request the test was just added to usual PMR monitoring tests.

bussell profile image
bussell in reply to HeronNS

Yes, I take your point. Next telephone consultation with the the GP I'll mention it, but so far monitoring of any sort has not been on the agenda. We just have a brief chat about how the reduction in pred is going and he sends through the next month's prescription to the pharmacy. I suppose one day I might see someone face to face, but I'm not holding my breath....and to be fair, so far there has been no reason to get insistent.

HeronNS profile image
HeronNS in reply to bussell

Just noticed you said zolendronate vaccine. Surely that is a drug injection (for osteoporosis) not a vaccination (to protect against infectious disease)?

bussell profile image
bussell in reply to HeronNS

Quite right. My slip. I should have said zolendronate infusion, which is given annually Thanks for pointing it out.

PMRpro profile image
PMRproAmbassador

It wasn't/isn't a case of lobbying them to cover it - the supplies were not available after the US insurance companies bought up large stocks and then there was not enough to supply state funded systems which require enough to offer to all eligible patients. I imagine that hasn't been helped by the Covid situation. You can't have what isn't on the shelf ...

HeronNS profile image
HeronNS in reply to PMRpro

Is there still a major shortage? There was in Canada for a time, but the pharmacist said there was plenty. I didn't ask her about the world supply! In any event, the company expects to vastly increase its supply in 2024, for those who can hang on that long. The cost to me is about $40 for each shot. Without insurance the full course of two shots is about $300.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Not sure - but the amount required to fully supply all the publicly funded heathcare services in Europe is massive and most things have been affected by Covid.

HeronNS profile image
HeronNS in reply to PMRpro

True. And the manufacturer is one of the ones involved in covid vaccine development so no doubt that's having a direct effect on the resources they have available. Like most covid vaccines, they have to make sure there's enough for everyone to get that second shot within a few months.

Today here it is absolutely glorious. After what seems weeks of humidity and for a couple of days high haze from the forest fires, one forgets what a really nice sunny day is like, how it uplifts the spirit.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

It's silly little things you don't think of - there was a shortage of the little 10ml bottles the vaccine is stored in. The magnesium I buy was in them - no more, in plastic tubes which has plusses and minuses. Lighter to carry but glass is better recycleable ...

I am convinced that Zostavax gave me PMR as the biceps muscle pains began three weeks later. However my hubby had shingles a few years ago and that was pretty bad —- and the neuralgia pains in his side lasted for two years! Choices!

I'm in the UK. I got the shingles vaccine offer. I did an econsult to my GP who said to make an appointment and say I need the shingrix and NOT the other. I may get InTouch with my R/A consultant as I'm on methotrexate and adalimumab injections.

MrsNails profile image
MrsNails in reply to linmar

You may find this helpful but do check with your Rheumy Team

MrsN

healthunlocked.com/pmrgcauk...

versusarthritis.org/about-a...

HeronNS profile image
HeronNS in reply to MrsNails

Certainly looks like Zostavax is not worth the risk, especially as its effectiveness decreases with age, unlike Shingrix. I hope the UK is able to get a supply of Shingrix and add it to the vaccines given by your public health care system.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

See reply to MrsNails - new post re Shingrix vaccine and immune suppressed

HeronNS profile image
HeronNS in reply to DorsetLady

Yay!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to MrsNails

Just added new post - healthunlocked.com/pmrgcauk...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to linmar

See this - healthunlocked.com/pmrgcauk...

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