Flu shot ? : Are people with APS or... - Hughes Syndrome A...

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Flu shot ?

Youmi111 profile image
19 Replies

Are people with APS or compromised immune system not suppose to get the flu shot? My dr says I should as I also have IGA deficiency (barely have this in my system). I was doing IVIG infusions until a few years later I had a bad reaction - so I stopped them. I’m a lil confused as I read different things in this site. Thank you

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Youmi111
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19 Replies
lupus-support1 profile image
lupus-support1Administrator

It is very important to have the flu shot & pneumovax.

Mermaidatheart profile image
Mermaidatheart

I have the flu shot every year. Also this year did the shingles shots.

MaryF profile image
MaryFAdministrator

I can't have the shots due to my particular mix of diseases and my extreme allergies, however if you are able to tolerate these annual injections, it is definitely a conversation to have with your GP practice. MaryF

HollyHeski profile image
HollyHeskiAdministrator

It is confusing as some are ok and some have reactions!Not the answer you wanted, but APS is so unique to each patient.

I'm triple positive primary APS, with sjogrens and Raynards thrown in the mix, I've always (touch wood) been ok with flu and pneumonia jabs.

A discussion with your GP or specialist, it is important if you can to do so.

Ozchick profile image
Ozchick

Yep! Both flu and Pneumovax.

Nesting profile image
Nesting

Yes second year I’ve had the flu jab since getting diagnosed with aps

Hi. I no longer get the flu shot (Over 10 years). I have never had the flu, even when my kids had it. I see a naturalpathic doctor and have improved greatly in many areas . I would research it, And ask your doctor. Know the ingredients that are in it. Then decide. :).

WendyWoo50 profile image
WendyWoo50

It’s a hard one that seems to differ from person to person. I am Lupus anticoagulant positive APS and have: Lupus SLE, Sjogrens, Fibromyalgia, a genetic Electrical Heart Condition (Long QT), mild Mitral Valve Regurgitation and horrific Migraines.

My GP defers me to my rheumatologist re the Flu jab (an amazing consultant). She and I discuss it every year and have always decided that it’s best I don’t have it. I think it’s more a case of my system is under such stress all the time.

This year with everyone doing hands, space, face... and me not going out I hope the risk to everyone for the winter bugs is minimal.

I don’t think this is particularly very helpful to you but my advice is to definitely discus with your consultant - even via e-mail?

Good luck. Be safe. 💋 x

Ray46 profile image
Ray46

It depends (which is why you'll see different answers). You really need to discuss with your doctors who know your case. I _did_ have it after diagnosis with APS but after some years of having very bad winters after having it (might be the jab, might be something else), I no longer do - after discussion with doctors.

Your risk of catching it needs to be taken into account as well, when I had it (the jab) I was not only not well and not stable with APS, I was also (as one doctor put it) "spending a lot of time in hospital waiting rooms" (not doing that at the moment!). There is a reason they usually give it to over 65 _and_ doctors and nurses who are younger - the exposure risk for doctors etc. is far far greater.

hihannula profile image
hihannula

Since being diagnosed with Lupus, APS, 37 years ago, I’ve not had any vaccines. I feel if you are not a high risk of contracting the flu, then why get it. I may regret it one day, but for the time being, I’ve been doing fine without them.

Jumper99 profile image
Jumper99

I think it depends on how your own immune system performs. I have aps , lupus, sjogrens, micro vascular angina. I have had pneumonia 30 years ago. I know without any doubt that I catch respiratory viruses very easily and they usually hit me very badly. So I have had the flu jab ever since I had pneumonia (which pre-dated all the rest of my conditions being diagnosed) and I have had the pneumovax injections too. I’ve never had any problems with them. My doctors insist too, to the point that twice my doctors have refused to let me leave an appointment with them until I’ve had my flu jab!

Your situation includes IgA deficiency which I don’t have and the rest of us here answering don’t have. So from this point of view, I think it’s a good idea to talk to your consultant or GP as the experiences of the rest of us won’t really be applicable to you. I would do it soon too as we are already in December.

panda60 profile image
panda60

been having vaccines for over 20 yrs before and after being diagnosed with APS. Never had any issues and they do work - my then teenage son got flu and I felt feverish for a few hours and then fine. I envy pregnant women who can have them - they weren't available in the 1980s and I caught flu when I was six months pregnant. I was seriously unwell and took weeks to recover, fortunately baby was ok!

nurse_ninja profile image
nurse_ninja

Hi Youmi111, I also have APS and have recently realized that I have a sulfur sensitivity. I am sensative to eggs ( high in sulfur) The flu vaccine in created in eggs.... So, everything I get the flu shot.... I get Super Sick. Two years ago, I got the flu shot & 6 days later, I developed appendicitis and required emergency surgery. I am a RN by trade. As I was walking around the hospital, pushing my IV pole, I ran into another nursing friend. We both had the flu shot -6 days earlier. We both had appendicitis. Later, I googled it.... There is reseach going on right now, where there maybe a link to the Flu shot & appenditis by the CDC. If you are allergic to eggs, it is contraindicated. I personally do not take the flu shot anymore. Even though, it is recommended for me. The chances that the CDC will guessing the 4 most popular strains of this year's flu is like guessing the winning lottery numbers.

hihannula profile image
hihannula in reply to nurse_ninja

Sorry to hear of your suffering. I was wondering what happens when you eat eggs/shulpher foods?

Youmi111 profile image
Youmi111 in reply to hihannula

Sometimes I get diarrhea but other than that no problem.

nurse_ninja profile image
nurse_ninja in reply to Youmi111

Don't feel bad for me.... It actually could havebeen so much worse. I feel so blessed and fortunate. To answer your question:

My skin breaks out in plaque Psrosis and I have noticed my asthma gets worse. I have a chronic cough from the asthma, that gets worse. It took a long time for me to figure out the sulfa thing. My hair at one point was falling out in clumps and my scalp was tender. I use to cook with lots of garlic & onions. I now believe those are bad for me too. Onions are high in sulfur and the garlic stimulates my immune response. I now know that my stomach is the root to my health problems.... Leaky gut is what I think is going on with me. Belly bloating, heart burn, indigestion, constipation, and gas are my gut symptoms. I started taking GutMD.... 1 hour before I get. It has made a huge difference for me.

Youmi111 profile image
Youmi111

Thank you everyone for your wonderful wisdom. I will definitely talk to the dr and weigh out my pros and cons.

FTSP profile image
FTSP

I also have a complete absence of IgA, though I don't know if my IgG is ok. Also APS, obviously. I've had the flu jab for the last 5 years and haven't had flu in that time, just the usual few colds.

You might also be interested in this from Primary Immunodeficiency UK on the covid vaccine and the likes of us - piduk.org/whatarepids/manag...

Youmi111 profile image
Youmi111 in reply to FTSP

Thank you

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