Shingles vaccine

[scats]

I know this has been discussed several times and is covered in FAQs so I apologise for raising it again.

Last year I was told by my GP practice not to have the shnigels vaccine because it was live and I was considered immunosuppressed being on 5mg of pred. This year they say it's safe for me to have it and in fact they would recommend it even though I am still on 5mg. They now consider it safe for anyone on less than 20mg

I wondered if anyone else has been told similar. Is there actually a recognised dose of pred below which immunosuppression is no longer a problem?

I have PMR and have been on pred 6.5 years never getting below 5mg but ever hopeful

[MrsNails]

Have you looked in the Green Book to see if the advice has changed?

gov.uk/government/publicati...

[scats in reply to MrsNails]

Thanks for the quick reply, I am wading through the small print😂

[Brikel in reply to MrsNails]

just had my second jab for shingles I was told that because I’m immunosuppressed I had to have the dead virus.

.I had one in July and the second one yesterday

[MrsNails in reply to Brikel]

That’s good, do you feel OK?

[Brikel in reply to MrsNails]

Thanks for asking

a sore arm and feeling a bit yucky but apart from that I’m ok

[MrsNails in reply to Brikel]

Take it easy x

[DorsetLady PMRGCAuk volunteer]

I wouldn’t be going for live vaccine… what have surgery said about the Shingrix one?

[scats in reply to DorsetLady]

They said that it was available this year but that I don't qualify and will be fine on the ordinary one.

I have just checked the green book as recommended by Mrsnails, that says short term more than 20mg to qualify or long term more than 10mg. to qualify as immunosuppressed. Difficult to know with us as we are constantly trying to reduce.

thanks for your reply

[DorsetLady PMRGCAuk volunteer in reply to scats]

Not sure you will “be fine” on live one …. and yes I read that from Green Book.

I declined live one a few years ago-just after my GCA went into remission -and when invited again this year -stated I would only have it provided it was Shingrix because I wasn’t prepared to risk a relapse of GCA. Luckily they agreed.

But obviously it’s your choice..

[scats in reply to DorsetLady]

I tend to agree, I'm uneasy with a live vaccine. Perhaps I should see what the rheumatology dept suggest. As I don't mix often with children I may be safer without a vax, who knows.

long time since we've 'spoken' here, hope you're keeping well and that the cats still occasionally fly

[DorsetLady PMRGCAuk volunteer in reply to scats]

Agree, it might be sensible , and maybe fortuitous to run pass Rheumy Dept.,

Me and the cats are doing fine thank you very much…😊…hope you are, despite the current hassle…

[scats in reply to DorsetLady]

Still toddling along thanks. Toddling being very appropriate

[DorsetLady PMRGCAuk volunteer in reply to scats]

Toddling’s fine… 😊

[Knip in reply to DorsetLady]

I, too, declined a shingles vaccine two years ago, but asked my GP about it again this year when having my flu jab (Covid jab already done). He asked me to ring Rhuematology who have advised the Shingrix. I agree that checking with the hospital is probably the way to go. K.

[scats in reply to Knip]

Thanks, nice to know I'm not alone in

questioning

[Hidden in reply to DorsetLady]

this is an interesting discussion. When and if I’m offered a shingles vaccination (70)? I plan to decline the live one on the basis of having g chronic AI illnesses and possible issues……… not enough research……. Covid jabs exacerbated symptoms already….., still, a lot can happen between now and then.

[MrsNails]

scats

Might be worth checking what the BRS say - l’ll see if l can find anything

rheumatology.org.uk/news/de...

[scats in reply to MrsNails]

Thanks Angela, you certainly know how to get hold of all the info . Very helpful

[MrsNails in reply to scats]

Hope it helps x

[PMRpro Ambassador in reply to MrsNails]

Trouble is - too many GPs take on the attitude that a low pred dose doesn't contraindicate it.

[MrsNails in reply to PMRpro]

This is when you need to be able to quote the Guidelines……

[PMRpro Ambassador in reply to MrsNails]

Mmmm- but they don't specify dose without a major search - 5 clicks! And then it says 10mg is the baseline dose.

"Individuals with chronic immune mediated inflammatory disease who are receiving or have received immunosuppressive therapy

● moderate to high dose corticosteroids (equivalent ≥20mg prednisolone per day) for more than 10 days in the previous month

● long term moderate dose corticosteroids (equivalent to ≥10mg prednisolone per day for more than 4 weeks) in the previous 3 months"

If you are lucky your GP will approve it at a lower dose, it has been for several.

And biologics are obvious - or they were to me.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

What and make things easy 🤔

[PMRpro Ambassador in reply to DorsetLady]

Well obviously!!! And it takes a bit of reading in between to find the bit to click on. GPs wouldn't stay the course.

[scats in reply to PMRpro]

This appears to contradict nhs.uk/medicines/prednisolo.... How are nar humans supposed to know?

[PMRpro Ambassador in reply to scats]

That's a better one to quote first and hope the GP doesn't go into it any further!

[scats in reply to PMRpro]

😂😂 you have such a high opinion of GPs.😂😂

I know I am not severely compromised but as I still have several side effects from pred I can only assume it is still doing it's job. PMR is still around as when I try to reduce even 0.5mg it hits back. In the summer I had to increase to 7mg to cope with having builders in. I will not be risking a live vaccine

[PMRpro Ambassador in reply to scats]

I don't even want my flu and Covid booster a the same time - a couple of weeks apart would suit me nicely! I don't know if I can swing that here - not just pred to worry about now but tocilizumab too ...

[paulus65]

I am on 3mgs pred and was offered (and had) the Shingrex vac with no problems

[scats in reply to paulus65]

thanks, I wonder why there is no consistancy

[DorsetLady PMRGCAuk volunteer in reply to scats]

Very often down to individual GPs.

[PMRpro Ambassador in reply to scats]

Saying no gives them a feeling of power.

[Longtimer]

Weird surgery...Have had one Shingrix..non live for shingles, having second one in week or two....I am also on 5mg....but before the needle goes in...check it`s the NON live one.... Shingrix....I do....

[DAW28]

There are two shingles vaccines Zostavax which is not recommended for immunosuppressed patients as it is a live vaccine and Shingrix which is a recombinant vaccine. I had the Shingrix vaccine (which is given in 2 doses) earlier this year with no side effects. Hope this helps

[scats in reply to DAW28]

thanks, unfortunately my GP wants to use Zostavax so I'm in for an argument

[HeronNS in reply to scats]

DO NOT TAKE ZOSTAVAX. Apart from the risk of your having live vaccine and no live vaccine is recommended for us, Zostavax is not as effective at preventing shingles, and becomes ever less effective the older the recipient is. I had two Shingrix shots within the past year and reacted quite strongly (mostly fatigue, I slept a lot for a day or two), and since then my PMR symptoms have been much more under control. So I have nothing but good things to say about Shingrix although I expect others will disagree. There is info on line comparing the two vaccines and this is how I know that Shingrix is, generally speaking, a better vaccine for any (elder) age group or whatever the underlying medical conditions one may have.

[scats in reply to HeronNS]

thanks for replying

[PMRpro Ambassador in reply to scats]

I'm fairly sure I have seen Zostavax can trigger PMR. Last thing we need!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

used to be mentioned in patient info paperwork -but strangely seems to have disappeared!

[scats in reply to PMRpro]

I have too on the Mayo Clinic site

I can't get link to work as the las thing I add is deleted every

[scats in reply to scats]

connect.mayoclinic.org/disc...

[scats in reply to scats]

Got it. The one by the English Dr is

interesting

[PMRpro Ambassador in reply to scats]

This?

connect.mayoclinic.org/disc...

I don't like lawsuits but they do show what is being looked at:

aboutlawsuits.com/shingles-...

History is useful! Guess who wrote this?

patient.info/forums/discuss...

Merck admit it ...

[scats in reply to PMRpro]

I remember that person on that forum and to think that was 5 years ago. I got my link to work in my next reply to you not the same one.

All interesting thank you, I will go well

armed

[PMRpro Ambassador in reply to scats]

The link you've given is for Shingrix - there was some concern at one time about its use in patients with autoimmune histories.

[HeronNS in reply to PMRpro]

Was that because it used a new type of adjuvant? And these things don't get tested on the autoimmune. I was reluctant myself. It was only the constant talk of vaccination during covid and also reading how horrible shingles can be that made me change my mind and I'm very glad I did. Counting my bivalent vaccine, in the past 18 months or so I've had 8 vaccinations, and yet to get this year's flu vaccine. Apparently multiple vaccinations do not damage one!

[PMRpro Ambassador in reply to HeronNS]

It seems to be the adjuvants that cause the problems because their purpose is to encourage the immune response - and there is always the possibility for the disease process too. But then, anything can do that.

[HeronNS in reply to PMRpro]

That was my main reason for delaying having a shingles vaccination, once I'd been tested to find out I'd had chicken pox. That and the fact that my husband made very heavy weather out of his reaction to Shingrix! Whatever it did to me and my version of PMR was definitely good thing.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

History useful? So is a good memory,,,,,😊

[PMRpro Ambassador in reply to scats]

Forgot to say - whinge at HU, we'll wear them down eventually!

[WeAreAllMutants]

M 71 on pred 15 months currently at 9-10mg. I got the shingles (2nd) and tetanus shots a couple of weeks ago and sore arms plus feeling a little odder than usual for a couple of days were the only repercussions.

Second COVID booster + flu jabs five weeks ago - only problem was some wooziness the day after.

These shots weren’t bad for me, despite my PMR starting up after first COVID jab, but we are all mutants…

[WeAreAllMutants in reply to WeAreAllMutants]

My shingles vax were Shingrix

[scats in reply to WeAreAllMutants]

thankyou

[ValleysBoy]

Yes I was on 15mg pred and was told I had to have the ordinary shingles vaccine which is live. Even though the leaflet with the pred says no to live vaccines. The nurse said that is what the green book says as I was under 20mg of pred . So I opted not to have it. I did actually find the green book online and my reading of it was not the same as hers. Have a look and see what you think. She says she even consulted the local health board to make sure she was right.

Perhaps PMRPRO and others could look up the green book online and see what they think.

My situation has changed recently as I have been put on Leflunomide. My understanding is that I should definitely not have any kind of live vaccine whilst on it.

Hopefully they will let me have the shingrix vaccine now. I spoke to a different nurse yesterday when I went for my flu jab and she said to make 2 appointments as the shingrix has to be administered over 2 weeks. I won't know if the original nurse will step in and stop it like she did last time until I try.

I don't understand why they are so penicity about a couple of injections. My understanding is that in nhs terms they are not that expensive. I would rather be safe than sorry. Before I had PMR I had a really bad reaction to a yellow fever vaccine which is live. I was really ill. So I do not want to take a chance. But the nurse was adamant that I have the live one or nothing.

[MrsNails in reply to ValleysBoy]

l put the link up for the Green Book yesterday & is above plus the BRS Advice.

[HeronNS in reply to ValleysBoy]

There is no justification for preventing you from having the better, more effective and safer vaccine as that is your choice. Do not let them give you Zostavax. Good luck!

[calibriel]

I am on a very low dose of pred (recently reduced to 2.5, and going very slowly) and my surgery wants me to have the live vaccine. I’m not keen, and intending to hang on in the hope that I can reduce further before I have it … but I really, really don’t want to develop shingles. Keeping away from children won’t help as I have already had chicken pox. All I seem able to do is🤞

[scats in reply to calibriel]

mine are crossed for you, good lock🤞