I have just spoken to my GPs surgery and I am due a shingles vaccine but they're telling me the only one they are offering is a live vaccine and it is my decision if I want to have it!!
Explained I am on steroids and apparently they will not give non live vaccine. I am on 4mg and they said I should be fine with live vaccine as on low dose.
Can I ask what you're view is on this as I am unsure what to do.
Your expert advice would be appreciated.
The greater risk with the live Zostavax vaccine is that one of its listed adverse effects is PMR!!! You could try that argument - because they sound as if the immunosuppressed line isn't going to wash with them. I happen to think they are wrong but hey-ho! You DO have a autoimmune disorder which affects your immune system:
nhs.uk/conditions/vaccinati...
Mind you - since BoJo and co are now telling GPs to prioritise Covid jabs over ALL non-urgent medical care it might be a wait for the shingles jab anyway!!
Oh - and if they say they don't have it, point out it must be ordered for the named patient ...
Others with better knowledge will be along soon, but personally I would give it a miss.
Thanks just don't want shingles.
I ended up with pmr after the shingles jab. Certain factors proved that. However, maybe I'll never get shingles at least. I have friends who've had it very mildly and been no problem.
Poor you. Did you not have any symptoms before jag? Are you now on steroids?
No symptoms before. Then hit me like a ton of bricks. Diagnosed in A&E 6 years ago. Now on 3.5mg. Very sensitive so have to drop very carefully. Changed my life completely. ☹️
Same here. I acquired PMR after my shingles vaccine. And now, I’ve recently been diagnosed with RA. If it were me, I would definitely stay away.
Thanks for advice. Are you positive it was the vaccine that caused PMR
Back in the day, the patient information leaflet used to carry the warning that it (Zostavax) could trigger PMR. The latest version seems to have had removed, but this link makes interesting reading - aboutlawsuits.com/shingles-...
There is a fair amount of anecdotal evidence to support the link between the vaccine and PMR.
Thanks DorsetLady just read link and is frightening but appears some were given shingrix too so really confused
Thank you, DorsetLady. This was a very interesting read!
It can be anything that is the final straw - an illness, infection, accident, stress - or a vaccine - that stresses the immune system one too often and it goes haywire. It is an accumulation of events over a long period of time and eventually it snaps and goes nuts.
Hi PMRpro I feel I have been doing really well reducing so don't want to upset the apple cart so to speak.I have decided to go and speak to practice nurse tomorrow and ask for non live vaccine even if I have to pay for it.
Bear in mind though that even a non-live vaccine will have an effect on the immune system, especially when they have adjuvants. If you are that worried, I'd discussit with the GP if you can and see what they think.
Thanks PMRpro I did speak to gp a couple of months ago about it and his response was all the more reason to get off steroids😡. Have you had a vaccine. Can't remember what you said sorry.
Not for shingles no, not sure what the criteria are here, not old enough in the UK. I have had the Covid vaccines (Moderna and Pfizer) and always have the flu jab. I did have a flare with the second moderna. But you have to think what Covid (or indeed shingles) would do to your immune system.
Thanks PMRpro I have tried to explain but get receptionist who then speaks to nurse so no direct conversation.
I am upset because it should not be my decision to make.
Just don't want to get shingles either.
Try the practice manager and suggest you might take it further. The NHS offers it for those who need it - and I wouldn't have the Zostavax if offered it.
Thanks for your advice. Will try what you suggest.Hope you are doing OK after your loss xx
My understanding is if you get Zostavax and later have an opportunity to receive Shingrix it is possible, even advised.
PMRpro has answered, but just to let you know….
Although I have been off Pred for 5years (and GCA in remission) I have previously refused the Zostavax vaccine because I was concerned it might trigger a GCA resurgence.
Because the Shringrix is now available in England when I received invitation for Shingles vaccine last month, I thought I’d ask if I could have it because of my history….surprise, surprise GP said yes!
When I booked there was some confusion with receptionist, but as everything was in writing via eConsult, I eventually got notification it would be Shringrix.
I am booked for first vaccine tomorrow, but I will double check before I have it!
Do you have eConsult facility at your surgery, if so might be worth using that… it has to be seen by a clinician, so you get the answer from the organ grinder…..
Hi DorsetLady don't have econsult I'm afraid.
Scotland seems to be different from England but will speak to practice manager first thanks.
Yes do try that route….hope it’s successful.
Thanks for your help again x
Thanks DorsetLady good to get some feed back.Iam doing OK with my PMR and don't want to rock the boat but due shingles vaccine, I've made decision now after reading posts iam not taking live vaccine.
No, but you should be able to get Shingrix - it’s for people like you- and others on here.Had my first one yesterday afternoon - so far, so good, just usual tenderness around injection site. But will report back after a few days.
Great you have got vaccine. Keep me posted on how you are doing x
I will, but you must remember my GCA is in remission and no Pred for a few years, so different scenario to most on here…
OK thanks x
Been to see practice nurse and she is checking to see if she can get non live vaccine but said she has never given anything other than zostavax.Will see what happens next.
Thanks will be great xx
Spoke to practice nurse and she is checking if she can get non live vaccine. She said she has always given zostavax so will wait and see what happens next.
Good…I am going to write another post later this evening or tomorrow to give update on mine yesterday….will link you in when I do it.
Great thanks. Thanks for the help I get from you and others.It is so reassuring to talk to people with knowledge and experience xx
If you can possibly get Shingrix do so. It is not live, and it is more effective and longer lasting than Zostavax. As far as I know Zostavax is no longer available in the US, and is being phased out in Canada. Only Shingrix was mentioned to me when I decided to have the vaccine. I did experience short term reaction, mostly extreme fatigue about six hours after shot, so I just went to bed early. Strangely I found it a little easier to taper for a few weeks after the vaccine (have been dealing with major flare in disease activity since early this year). Curious to find out what happens after the second dose, due in January.
Thanks HeronNS we seem to be behind with Shringix here in Scotland but will try practice manager.
I find it interesting that the Zostavax is no longer available in the U.S. I wonder why…..
I think because it isn't as effective, particularly in the older population which needs it most, and doesn't retain its effectiveness over the years as well as Shingrix. I read up on it some time ago so not sure of the details.
I am in the exact same situation, I have declined for the present, but requested the non live one. Am waiting to hear.
Thanks let me know how you get on.
My understanding is we can only have Shingrix as it is not a live vaccine. I’m recovering from shingles at the moment, still have pain from it beginning in September. I am almost 68 so can’t have it until I’m 70 but will definitely take it then .
Please do not have the live shingles vaccine.I am on 5mg of pred and my doctors gave me the new one, although i am still in dispute regarding my second dose.
Thanks really confusing advice at surgery
Is it you who has been told to get second dose too soon? One month?
Yes I was told to make an app for my second dose in four weeks but,have ignored it and will make one at the correct time
Good for you. Really they should at least read manufacturer's literature!
My name at our doctors is trouble because I question everything they say.
Hi there, I had to fight and fight to get Shingrix vaccine where I live. Sent letters and lots of info to my GP Surgery addressed to both the Practice Manager and the Senior Partner. However I had at that time been on over 10mg of Pred for more than 6 months, diagnosed April 2021 and started on 20mg. Now working hard to get down to 10mg but tough and now sticking on 4th week of slow taper until after Christmas. I have copies of letters and documents I sent to my Surgery so if you'd like me to forward to you i'll give it a go. Please send me a private message. Basically I used the NHS Patient Directive Guidlines, clause 26. Take a look online, makes it pretty clear for the GP. Good Luck. I'm having my second Shingrix on Jan 5, first was Nov 5 just a sore arm. Would advise against Zostavax at the mo. Best of luck.
My advice is please do not have Zostavax . I developed PMR 3 years ago after getting the vaccine. Lots of evidence in US who stopped using it for the same reason and only give Shingrix now. there are lawsuits in US. My experience has been that GP’s are unaware of this effect , I was told GP’s had nothing to do with vaccinations it is the nurses job. It isn’t that effective as preventing shingle anyway , only 50/60 per cent I think. No way would I accept a live vaccine again and especially these days with Covid 19 around. It is so bad that the drug company know PMR is a possible serious side effect the other one is exacerbation of asthma. I see they have changed PMR to muscle pain. Of course I don’t have a clue what getting Zostavax would or could affect you as you have PMR.
In UK there was a three year push to get people vaccinated for shingles with Zostavax. Shingrix was only available privately then.
I really wish I knew what I know now .
I spoke to my gp yesterday and asked about Shingrix, and the fact that as I was under 70 I may not get it, and she said I would due to my meds, but they needed a letter from the rheumatologist and then they would order it in.Might be worth a try.
Unfortunately not under rheumatologist only gp but will try and speak to them again thanks.
Oh sorry... good luck
I had my shingles jab then told it would not stop me from getting shingles but it wouldn't be so severe, then I got pmr a year later. I wish I had declined the injection.
Thanks for your response x
From what I've heard about shingles, I'm not so sure you made the wrong decision, but it is unfortunate the better vaccine wasn't available to you. However I would have thought a vaccine reaction would happen much sooner than a year?
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