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Sticky Blood-Hughes Syndrome Support
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Flu vaccine

The time for flu vaccination will be hear soon. Last year's vaccine was not much of a success. The choice this year seems to be the triple vaccine with a booster for the over 65s or the quad vaccine without booster for those under 65.

I have Lupus antiphospholipid Syndrome and sjogrins. I am over 65. Does anyone know if you can get a quad vaccine with a booster anywhere?

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Where are you located? If in the UK you will get the Flu jab free. If else where we can’t help with that.

BTW Hughes Syndrome is not called Lupus antiphospholipid Syndrome. You may have the Antibody Lupus anticoagulant but that has nothing to do with Lupus. The disease is either called Hughes Syndrome or Antiphospholipid Syndrome and can be shortened to APS. It’s also commonly referred to as Sticky Blood.

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Her vocabulary is your clue... she’s American! My Hematologist in San Antonio Texas kept correcting me when I called it Hughes Syndrome... ( he called it “APLS” and told me to do the same. He also told me I had ,”Lupus Anticoagulant “ which really confused me since I was put on warfarin immediately after my first obligatory tests were performed- and LA was the only one negative. )

I asked- “ I’m LA positive now? Did you do a test for that antibody despite the fact that I’m on warfarin?”

Seriously- this is why it just needs to be named “ Hughes Syndrome!!!!!!!”

I’m probably not done ranting.

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The name Lupus Anticoagulant confuses doctors & patients because they think it is a test for SLE, rather than a clotting test! Unfortunately, some doctors refuse to recognise "Hughes Syndrome"! Dr Graham RV Hughes is unusual because he has a syndrome named after him while still living. May he live to 120 years! He has won many international awards, yet UK hasn't recognised hi work whatsoever! If they can knight pop stars . . .

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Absolutely! I’ve often though exactly the same thing.

Thinking it is not the same as doing something about it though...

Hello.... not my country... toes and all. Don’t want to step on any. And I don’t have any idea at all how it works. Can I just knock on the queens front door? “Hello madam? Might I make a suggestion? “😉

( I would bring her flowers and a lovely pair of cowboy boots- I DO have nice manners after all!!)

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Actually it's the Government! But they need to have a nomination from whoever! Unfortunately, there seems to be a lot of politics involved! Envy and jealousy!

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Hmmmmmm.... very very sad. Same the world over, isn’t it?

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I live in England in the Midlands. I was diagnosed with systemic lupus and antiphospholipid Syndrome and sjogrins syndrome in 1997 by Graham Hughes. I need to take warfarin to achieve a INR of 3-4.

I am interested in the 18/19 flu vaccine because the one with the booster for the elderly only contains 3 vaccines instead of 4. The Vaccine with 4 types has no booster and is just for younger people. I want to find if there is anything better for the elderly. Lots of them died last year.

I would rather have the option of paying myself if something better is available and I suspect many other people would.

I would also like to find out if anything is being done to solve the problems with CoaguChek. I use INRange and with INR range 3-4 I am usually 3.6 or above.

I have recently had to have vein tests twice a week.

Does anyone know what is happening with CoaguChek?

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Maz I would suggest you post a separate post on that as you will get more replies that way. Thanks

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By the way Maz 189- I’m American, too🌵🇺🇸

Texan, a Lone Star Cowgirl deep in heart of Texas.

I travel to the U.K. at the request of my medical team (when I was initially diagnosed November 2016)

This forum is administered by Lovley British women-and I’d say well over 75% of active members are from the UK although it’s certainly an international forum and the more the merrier. The global outreach and networking here between members ( doctor recommendations ) are gifts beyond measure.

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The flu vaccine is not my area of expertise, my mother as a busy ward sister during her working life never missed one, however I am not allowed to have one due to my severe drug reactions. MaryF

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