Behcet's Syndrome Society
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The Annual Flu Jab, is it good for Behcets?

So, I received a letter from my local surgery about the categories that are entitled to the annual free flu jab in the UK.

I was obviously being offered one as a member of a group that can be immuno suppressed or have neurological issues .

My first thought was great , I have often thought how useful the jab would be to stop the potential of catching an infection that could cause a flare up. It would certainly mean I could live a little less like John Travolta in , Boy in a Bubble, but then I wondered.

Will I cause myself more harm than good?

With my reactions to blood tests , and injections and having work done at the dentist. And the possibility that it could bring on a mild infection reaction itself.

Fine for the healthy , but could that cause a flare up itself?

So, I have come to ask the experts on here about wether the flu jab is the right thing to do with Behcets.

Can it or has it caused any of you a bad reaction?

Has it been a life saver ?

Are there any particular makes that are recommended for Behcets sufferers , and do any of you have advice about preventing reactions to injections or blood tests?

Looking forward to your answers before the season of coughs , colds and bobble hats sets in.

Bleary-eyed

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Apart from having it in the wrong arm, the one I lie on, only a bit of worsening of a flare for a few days, nothing significant. Probably just because I could not sleep due to my arm being sore ;) This year is not a live vaccine but apparently there are some right nasties doing the rounds so it's an action packed jab :) I always take antihistamines anyway and double up after a jab. If anything is going to cause a problem it's likely to be the stuff they put the vaccine in or grew the vaccine on ;)

XX

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Thanks for that, never even thought about the issues of what it is grown on being an allergen.

I just read a post from a few years ago about the fact that the jab is less effective for BD sufferers over other people with health issues and that at the time they were giving some patients a double dose to improve the immunity.

Was that the same for you?

Do you get the option of a choice for one which which helps reduce the possibility of a reaction, or is it lets hope one size fits all as usual?

Going to write you an email now .

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Hi Blearyeyed,

This same topic came up almost a year ago -- here's a link for you to see what people answered back then.

healthunlocked.com/behcetsu...

I'm going to look online for more updated info -- will post when I find it.

(FWIW, I'm getting a flu shot soon. I've done fine with them, no issues... but everyone's different!)

Joanne Z.

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Thanks again for the great links.

It isn't suprising that this comes up every year , probably with new patients , because you are unfortunately not readily given this information via clinic and most GP Surgeries have no real knowledge on what you should do.

I am now at a point that I do not trust my GP Surgery when they flippantly say that it should be fine.

If they have not got even the basic facts about, diet, lifestyle and reactions to allergens to call upon , I am not willing to trust their offhand opinions on things I know they haven't bothered to check.

Glad to hear two sufferers so far have had the jab without a reaction, it gives me more peace of mind about making a well informed decision about what I will do.

Looking forward to seeing your other research

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I'm back with some more information about flu shots.

First, here's info that was presented at a rheumatology conference in 2013; it's about getting a flu shot when you have Behcet's. I think someone else might have mentioned this one already:

"Behcet's disease activity: An important factor for immunogenecity of unadjuvanted influenza A/H1N1 vaccine"

ard.bmj.com/content/72/Supp...

If you want to know what that article means in plain English instead, I posted that info on my Essential Behcet's blog a few years ago:

behcets.blogspot.com/2013/1...

Here's another article -- this one came out in 2011, and it's already in plain language. It covers a few different types of vaccines, not just the flu vaccine.

"EULAR (European League Against Rheumatism): Vaccination for people with autoimmune inflammatory rheumatic diseases"

You can read it here:

ard.bmj.com/content/annrheu...

And another article:

"Influenza vaccination in autoimmune rheumatic disease patients" (2012)

Here's the article:

researchgate.net/publicatio...

(scroll down the page to read the article, or click the blue box for "Download full-text PDF"

There are other articles that talk about getting a flu shot if you're taking DMARDS or methotrexate or anti-TNF meds, etc. It's best to ask your doctor about that!

Hope this helps :-)

Joanne Z.

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Amazing thank you so much I will get my bleary eyed on them in the morning.

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Hi I have had the flu jab every year since I was diagnosed with BD. My dr's surgery always make sure I'm given the non live vaccine & have never had a problem. They also give me a pneumonia shot as well. I think it's definitely worth having even if it causes a mild flare up. Better that than being struck down with serious flu that could set you back months.

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Thanks alot that is a really good tip. I will definitely request the non live jab and enquire about the pneumonia one too. Thanks for taking the time to help.

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Hi

I have been having my flu jab for some years now, and i’ve also had the pneumonia one too.

I don’t recall having extreme reactions to them, my arm feels sore for a few days.

However having had a very bad viral infection which has lead to chest infections, pneumonia five times and pleurisy twice I decided the sore arm is worth it. For the last 5 years I’ve come through winter with just a sniffle so it definitely works for me.

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Thanks for answering. I agree a sore arm is worth it not to get a winter infection that brings on a whole catalogue of problems and a nasty flare.

I just wanted to make sure that no BD sufferers had experienced a flare in their usual BD symptoms after having the vaccine itself , with it causing the immune system to kick up a gear . I get flare ups in my mouth from having even simple dental checks and have usually had infection like issues after work or surgery in the past which meant I was eventually given antibiotics as a precaution.

You have all given me the peace of mind to go ahead now I have had some proper informed advice.

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Here is an article that I read a while back. I should do some new , or updated, research though. behcets.blogspot.com/2013/1...

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Thanks alot , I really appreciate all the help I am getting , and far quicker than getting support or accurate advice from the docs!

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Hi

As I r call, Prof fortune at least non Coe said t avoid timing the vaccine n the midst of a flare. Otherwise non live vaccine ok. That’s what I understood her thanks say

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Thanks having information on how or which vaccine to have if you are in a flare when you should get it is really useful. I am having a flare of the gastro intestinal and joint pain and eye irritation at the moment so I will wait awhile before booking a jab, in the hope they will sort out an appropriate meds combo for me soon. Literally counting down the painful minutes to my next appointment in October.

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Hi Blearyeyed,

I’ll just add my voice to all the others and say that I’ve been having the flu jab for years, including every year over the last 6 since being diagnosed with Behçets. I have never had a reaction to the jab and, other than a slightly sore arm, have had no problems at all. I also haven’t caught any flu like illness so I guess it’s worked well for me!

Wishing you all the best,

Will 😃

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Thank you so much the more positive reactions people tell me about the happier I am about taking any medical care.

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Thank you so much everybody, you have given me some great information and point my mind at ease about taking the flu vaccine with Behcets.

So , I hope to get my present flare under some control, then ask for the non live jab, prepare for the usual raised lump sore arm at the injection site but hopefully there will be no reaction to the vaccine itself.

I love a happy ending!

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Ps warm, not hot compresses (face washer works) help chalazion and styes, but do nothing for a concretion.

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I get the flu shot every year and I’ve noticed if I don’t use my arm afterwards and the following day, I get horrible muscle pain in that arm that last for months.

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Hello Blearyeyed,

Apologies for this belated answer. I've been attending the British Rheumatology Society Case-Based Conference in the QEII Conference Centre, London; where a number of presentation were offered on Behcet's Case Studies, and 6 Research Posters. There're a lot of people out there 'fighting our corner'.

In answer to your question. I am advised that:

In general there would be no contraindication to flu vaccination which is not a live vaccine and there is no evidence that flu vaccination would lead to a flair in disease. [ my comment: if it does flare with some people, please use this medium to let us know, which we can pass on to our supportive clinicians.] Whether to offer flu vaccination would also depend on the degree of immunosuppression with either steroids or additional disease suppressive drugs or biologics. If the patient is on any of these medications then vaccination would be advised though the immunological response to vaccination in the presence of immunosuppressive therapy may be compromised. [my comment: it may vary from case to case, so anyone with experience of this please let us know]. Patients who are on immunosuppressive therapy will however be at higher risk of complications of flu such as pneumonia so should be advised to be vaccinated.

So that's the advised position from one of our 'experts' - cognisant that our bodies have their own agenda; in my simple thesis, we have challenged our 'system' that has taken millennia to evolve and in such a comparatively shorter timescale than hitherto has been apparent - and that within which it can cope (or not). We have over-challenged our highly sophisticated system to all kinds of assaults. Medical surgery is one, diesel (carcinogenic) fumes that in nano-technology terms gets ingested into our system another. What we eat (the preservatives that are on our food) and so forth. When the sun goes down humans used to sleep, not watch TV, or wander around cities getting drunk et al, or sit behind a computer screen as I am now doing 3 hours after dark! Scientifically provable difficult, but it's a plain obvious fact. It's no wonder our bodies can't cope. Don't blame it, it's what we do to it! Log it down, it might help.

Our understanding of molecular-level issues will help provide solutions. In the meantime we have to 'hang in there and stick together' - and exchange experiences and examples. As in that great film (well I think so anyway) Gladiator; "Whatever comes out of those gates, we'll be better if we stick together. Stick together and we'll survive" - or something like that!

For those reading this exchange, and who are not members of our Society, please join. We aim (and are going) to make a difference.

Tony

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