Question re Shingles vaccination: There have... - Vasculitis UK

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Question re Shingles vaccination

nanaC profile image
22 Replies

There have been a couple of posts recently about Shingles. I am over 70 and would therefore normally be advised to have the vaccine, however I know that it is not normally recommended for those on immunosuppresssants. There is an article on the Vasculitis website about this, provided by Prof.Morgan and Matt Harper, and it quotes the advice from Public Health which says that those taking low dose therapy with Azathioprine are not considered sufficiently immunosuppressive and therefore not contraindicated for administration of the vaccine. I am currently in remission from EGPA and take 5mg prednisolone and 100 mg Azathioprine a day. The dose of Azathioprine corresponds with the low dose mentioned by Public Health (i.e 3.0 mg per kg body weight.) and on that basis could be allowed.

I am currently under the care of the renal team at Derby,and I mentioned this at my last check , but they have still advised me not to have the vaccine. My husband is also eligible and has been invited for the vaccine. NHS says that occasionally a person has developed chicken pox after having the vaccine.

Does anyone else have any information ,experience regarding this. Am currently thinking that I should not, but my husband should

Thank you in advance

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22 Replies
John_Mills profile image
John_MillsVolunteer

The risk of getting shingles is relatively small so if in doubt, I personally would not have the vaccine.

If you do think you have shingles at anytime, it is important to get medical help fast, and start anti virals ASAP.

nanaC profile image
nanaC in reply toJohn_Mills

Thank you John.

vivdunstan profile image
vivdunstanVolunteer in reply toJohn_Mills

Um I’m not sure the risk is small. I was reading about shingles again the other day, because I’ve got it for the second time, and I found a stat from NHS England that 1 in 4 people, roughly, will get shingles in their lifetime. See england.nhs.uk/south/wp-con...

I’ve had it twice now. If I could be vaccinated to stop it happening again I would.

John_Mills profile image
John_MillsVolunteer in reply tovivdunstan

I stand corrected ... 😊 hope you are recovering ok now.

I have had neither chicken pox so have never had shingles. We are always a little nervous when chicken pox does the rounds at the local schools and with having the grand children, but up to date the chicken pox has not got to me...yet..

John

vivdunstan profile image
vivdunstanVolunteer in reply toJohn_Mills

Happy to help :)

I've always been worried you'll get chickenpox John, but fingers crossed so far it hasn't happened.

Yes I'm largely recovered now, thanks. More menaced by a severe cold which kicked off big style a week ago, and even my healthy husband had to take time off work - he was very ill with it too. But the shingles anti virals worked wonders this time. So I'm good in that respect.

vivdunstan profile image
vivdunstanVolunteer in reply toJohn_Mills

Potentially anyone who has had chickenpox before can develop shingles from inside their own body, when the infection trapped inside their own body resurfaces. And seemingly that happens for 1/4 of the population. The risk is greater as you age, and greater for immunosuppressed people, the latter sometimes developing shingles multiple times.

AndrewT profile image
AndrewT

Dear nanaC,

I, whole heatedly, agree with John I wouldn't have this vaccine unless, it is recommended, for Medical Reasons. However, to answer your actual question....Yes, you could, have it- though it's NOT recommended and yes, you would PROBABLY be OK. So you see where, my advice, stems from nanaC.

In short unless there is actually an 'OUTBREAK', of Shingles, I wouldn't personally have the vaccine myself. Notwithstanding, yes there will be, a slight chance of catching Shingles, which could be Nasty- though there ARE Anti- Virials available.

This, has to be, your choice nanaC and we can only Guide You, as best we can. I know that John has already answered you and, I trust, others will too. Whatever, you decide, our Thoughts, and Prayers, are with you.

Kind regards

AndrewT

nanaC profile image
nanaC in reply toAndrewT

Thank you Andrew

vivdunstan profile image
vivdunstanVolunteer in reply toAndrewT

There is no such thing as an outbreak of shingles. Shingles happens individually, inside your own body, when a chickenpox infection you had in the past resurfaces. It is estimated that 1 in 4 people will get shingles in their lifetime. I’ve had it twice myself already. Goodness knows how many times I’ll have totted up by the end.

vivdunstan profile image
vivdunstanVolunteer in reply toAndrewT

And you cannot “catch” shingles. It is not transmitted. It comes from within your own body, a more local recurrence of chickenpox you had in the past.

lisat96 profile image
lisat96

There's a newer shingles vaccination called Shingrix. This one is not a live virus. It was 2 separate injections several months apart. I did have a 24 hour fever after the second jab but otherwise no other side effects. I also have EGPA and was referred for the vaccine by my rheumatologist. I had shingles many years ago and they were very painful. If you can get the newer vaccine, you might want to consider doing so.

AndrewT profile image
AndrewT in reply tolisat96

Thank you lisat96, for this new information. I will mention this, to my Consultant, when I see him- on Friday.

Warmest Wishes AndrewT

nanaC profile image
nanaC in reply tolisat96

Do you live in the U.K.? I am not sure that this vaccine is currently available here, I believe the NHS still use the old one

lisat96 profile image
lisat96 in reply tonanaC

No, I'm in the U.S. I think it was approved here in the end of 2017.

vivdunstan profile image
vivdunstanVolunteer in reply tolisat96

As far as I know the new vaccine isn’t available in the UK yet. I found this interesting July 2018 article comparing the two, and discussing the benefits of the new one in the UK, especially for immunosuppressed people like us.

prescriber.co.uk/wp-content...

vivdunstan profile image
vivdunstanVolunteer

nanaC replying to your original query, if your renal team still advise that you don’t get the vaccine I would trust them on this. But yes it should help your husband.

Shingles is very unpleasant, but the fear is that you might get chickenpox from the shingles vaccine, which can even kill.

If you do develop shingles, get the anti virals very fast, for the best possible outcome. Whatever time of day it is seek urgent medical help. But normally it is something you will get over, though in some cases it can cause permanent scarring and lifelong pain.

Good luck!

nanaC profile image
nanaC in reply tovivdunstan

Thank you for comments and for the article. I will not have the shingles vaccine, and leave my husband to decide if he wants to.I'm sorry to hear that you have had shingles , and more than once at that. I know it can be very painful. I currently have sciatica, and the pain has been very hard to cope with, even when you are drugged up with as much painkillers as you are allowed

PhiltheBear profile image
PhiltheBear

I'm in the situation of being a husband who has been invited for a shingles jab. My wife has GPA vasculitis. I am concerned that if I have it either it might cause her a problem (as it's a 'live' inoculation) or that I could get a resurgence of chickenpox which could also cause her a problem. My question ties in with the original post but from the other point of view e.g the husband's (and no, nanaC isn't my wife :) )

nanaC profile image
nanaC in reply toPhiltheBear

hello , i don't know if anyone replied to specifically , but you can see from the reply to me by vivdunstan that she says it could help my husband, this was also what my renal team told me. I admit its a dilemma, as you could have a reaction to the vaccine, or you could develop shingles if you don't have the vaccine, so I think its a matter of deciding what you feel would be best. Has your wife asked the team who look after her? id be interested to know whether their advice would be any different. Im still not sure whether my husband will go ahead or not.

PhiltheBear profile image
PhiltheBear in reply tonanaC

We are seeing her team later this week and we will be asking them. Unfortunately, I really don't have much confidence in her consultant as he's already given us two pieces of incorrect information. I'll let you know what is said.

PhiltheBear profile image
PhiltheBear

Further to my previous post, I asked the consultant about the shingles jab. It said it would be fine for me with no risk to my wife but that she should never have it. I hope that helps.

nanaC profile image
nanaC in reply toPhiltheBear

thank you

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