Shingles vaccination - or not?

[11541stella]

Hi all, hope to get some helpful advice on subject of shingles vaccination. Shingrix is available in my country (Norway) so I enquired of my GP about any recommendation in the light of my long-term polymyalgia (7+ years, maintained on 2.5 mg daily pred for about a year but unbelievably resistant to even very gradual reductions). I'm 71, no other medical conditions. The answer was that it isn't automatically recommended except when there is a history of shingles. I've had shingles once, about 3 years ago, and that was bad enough to convince me I don't want to build up a history!

What do you good folks think - should I press ahead with vaccination?

[piglette]

I can see no reason not to if you are able to get a vaccination.

[DorsetLady PMRGCAuk volunteer]

Absolutely- especially as you’ve had shingles previously and know how painful that can be.

[Bcol]

Sounds very sensible to me. Why wouldn't you., it's certainly a disease well worth avoiding if possible.

[Puska]

shingrix isn't a live vaccine so it should be perfectly fine.

[Jayneywales]

my rheumatologist told me that I would need to come off pred to have the vaccination- for it to be effective. But he was ok with the flu and Covid jabs but did warn that I might only get a 25-50% immunity

[11541stella]

Thanks for the helpful replies. I have picked up that it's a question of likely limited effectiveness - I think I need to set that against the possible adverse effect ( I gather there may be a small risk of inflaming pmr, even with the inactive vaccine?), and the horror of contemplating another bout of shingles. I suspect I will come down on side of having it.

I don't come on this forum so often now that I'm on low pred doses, but as always, I'm so grateful for the support.

[DorsetLady PMRGCAuk volunteer in reply to 11541stella]

In response to Jayneywales comment, most sites give a much better effectiveness for the shingrix vaccine than they quoted , although it’s obviously not as high for those immunocompromised patients as the general public. But better than getting shingles.

Not sure why they were told to come off Pred, nobody on this forum has been.

[PMRpro Ambassador in reply to 11541stella]

The previous Zostovax vaccine could trigger/poke PMR, that was known. Theoretically, any vaccine or environmental trigger could do it. But then you would do nothing.

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

seems to finally acknowledge there are different sorts of PMR. As we have been saying on the forum for years - but we are patients, what do we know!.

And as for "it doesn't work if you are on pred" - I think the research done on the Covid vaccines smashes that idea. It is harder to get the same reaction, but eventually we catch up, There are other immunosuppressant with a far greater suppressive effect, such as rituximab. And our deranged immune systems need all the help they can get.

[Miacaro45]

Run, don’t walk to get the vaccine. You do not want to get shingles!,

[11541stella in reply to Miacaro45]

I know! The one and only time I had it, it was located in my head and side of face and I was terrified it might spread into my eye. The more I think about this, the more it makes sense to take whatever small risks there might be! Thankfully I don't normally react badly to vaccines.

[Bungalows]

Do you know what the rationale is in Norway for not having a national shingles vaccination program (unlike flu or Covid for example)?

I see from the FHI (fhi.no/va/vaksinasjonsveile... web site that the live and non-live vaccines have been approved for use in Norway since 2006 and 2018 respectively with high effectiveness expected, so why no national program?

This same web site reports extremely high effectiveness in studies of the non-live (Shingrix) vaccine for many groups including heavily immunosuppressed (e.g. stem cell transplant patients) which you are definitely not based on only 2.5mg daily steroid.

[11541stella]

Thanks for this Bungalows - I don't know answer, have only had response from my GP and I was surprised - so thought I'd post here. I think it's a case of going back to him to discuss.

[agingfeminist]

I had my first shingrix vaccine..2 weeks ago and will have the second one in 4 months. Definitely have it...not contraindicated for PMR or for someone hwo has had shingles. BTW I had very minimal side effects from first jab. Take some paracetamol an hour before the jab. and have some handy in case you need it over the next coupld of days.

[PMRpro Ambassador]

It is recommended for people with a compromised immune system - and in my book that includes the derangement that leads to autoimmune disorders, whatever the dose of pred.

In the UK it is automatic at 70,

[angiek in reply to PMRpro]

And in actual fact from September this year is being rolled out to age 65+. If you are approaching 65 you can appply now. However the powers that be have decided -for reasons known only to themselves- to bypass anyone who is already 65, we will have to wait until we are 70!

[PMRpro Ambassador in reply to angiek]

Yes - that decision just makes me boggle!!!!!

[Bayleaf1 in reply to angiek]

I phoned my surgery and asked if I could have it and they agreed. I’m 66 and am having the first shot on Monday so count myself lucky.

[angiek in reply to Bayleaf1]

Oh well done, maybe I’ll try that! Thankyou

[puffyface]

I had my second shingles vaccine last week. I have a couple of autoimmunes…and I DO NOT want shingles. I felt a bit unwell and uncomfortable with both….but nothing that a couple of paracetamol and a good sleep won’t fix! Go get the vaccine! 😊

[11541stella]

Thanks to all who have replied, it has helped me to decide to go ahead with the vaccination - and I will try to get to the bottom of Norway's lack of routine programme. Surely not a cost issue in such a wealthy country!

[PMRpro Ambassador in reply to 11541stella]

It may be due to the actual relatively poor effect of the Zostovax vaccine which has been predominant until now. When Shingrix was introduced, the USA and other private healthcare systems bought out of what was being produced so there wasn't enough to supply the state funded systems all at once. Zostavax is no longer produced so slowly all are switching to SHingrix which claims to work far better,

[herdysheep]

I had mine a few weeks ago after waiting 5 years for the Shingrix to be available. I would have had it sooner if I could - no way do I need shingles on top of everything else. Recently had flu and covid jabs - about 10 days between each - and no flare so far!

[Poshcards]

most definitely, my mum was very ill with it, I have had both of my Shinglix jabs this year as well as Flu and 2 booster COVID jabs xx

[11541stella in reply to Poshcards]

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