Sticky Blood-Hughes Syndrome Support

Shingles Vaccine

I am booked for the Singles Vaccination later this week. But I gather it's not

suitable for people with a weakened immune system. I have APS and slight

Sjogrens, and am on life long Warfarin following two blood clots in my eye.

I don't know whether I fall into a patient with a "weakened immune system"

Does anyone know, or can advise me.

Thank you

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First, I am NOT a health professional. But my understanding is that “weakened immune system” refers to those who are chemo to treat cancer. Autoimmunity isnot a ‘“weakened” system but a “confused” immune system. I had a shingles shot some years ago and had no post-injection issues.

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Short answer - No your immune system is not "weakened", _unless_ you are on immunosuppressant drugs such as Azathioprine or Rituximab as well.

Long answer (it's complicated...):

With a disease like APS your immune system is over-active, not weakened. You very possibly shrug off coughs and colds faster than the rest of your household, or don't even notice them - I know I do. Your immune system is also running around misfiring and trying to kill you

Vaccines are the metaphorical equivalent of poking your immune system with a sharp stick and saying wake up you lazy ****. If your immune system is already half dead lying on the floor ("weakened") this isn't much help. On the other hand, if it is already awake and running round trying to kill you, you may want to question if poking it with a sharp stick is a good idea.

Then there is the added complication that some vaccines use "phospholipid adjuvants" i.e. they contain phospholipids. With APS, in effect your immune system is running around trying to kill you by attacking phospholipids, you may want to question the wisdom of poking it with a sharp stick _wrapped in phospholipids_...

I don't know if shingles vaccines contain phospholipids, if they do you may want to ask your doctor if it's a good idea for the reasons above. Don't expect a good answer because, honestly, nobody knows. There _is_ research that shows that APS can be triggered or flared by some vaccines, but no one can tell you the relative risks of vaccine or not.

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thank you for this explanation. I teach in public schools, and have tried the flu shot various years, and feel like I came closer to death (extremely sick) on those years that I took it, then those that I didn't and I just suffered through the flu. this helps explain. thanks!

also, I am looking for a specialist in Virginia - do you happen to know?

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Some research on flu shots and Lupus (SLE)/APS here: ncbi.nlm.nih.gov/pmc/articl... interesting reading, nearly half of patients flared afer vaccine, now, Lupus isn't APS but...

For what it's worth, which is very little, I had the flu shot once, post diagnosis, and had the worst winter ever. Since then I've gone without and felt much better. Could be many other things, including just coincidence, but I am not trying it again.

Sorry I don't know any specialists in Virginia - wrong side of the Atlantic!

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GinaD might be able to help

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I saw an APS specialty heme. My husband accompanied me. This heme was stellar! My husband remembers him telling me not to get even the flu vaccine . ( I missed him saying this, but not surprised I was likely busy processing the last thing he said, writing notes, and trying to formulate next question... )

So I am running around with no flu vaccine right now ... in and out of GP clinics and hospitals constantly for vein draws...

I feel like a sitting duck.

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i got shingles anyway. 1 percennt do.

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Hi, please do take advice from your main Hughes Syndrome/APS specialist. I can't have vaccines due to the way my mix of diseases behave, ie Stevens Johnson Disease etc. However I have found this for you. I don't think we are classed as having weakened immune systems.... isdbweb.org/documents/file/...

MaryF

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Thank you Mary, I think I'll give it a miss. I have had the flu and

Pneumonia vaccinations, so perhaps I'll stick with those.

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It's only if u are on an immunosuppressant u shouldn't have it.

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