Can I have the Vaccine?: Hi All, I’ve... - Hughes Syndrome A...

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Can I have the Vaccine?

Teanna profile image
16 Replies

Hi All,

I’ve not been online for quite a while. Can anyone tell me if I can have the Vaccine while I’m having 2 injections of blood thinner per day? I am having conflicting advice my my doctors/GP.

Also I suffer from Under active thyroid, 200mg x twice daily of thyroxine. I have Lupus (skin).

I have Liver Failure & I’m not happy with going to an emergency appointment tomorrow. (This hospital is almost closed to other patients unless emergencies).

The last thing, because I have many allergies etc, including the flu jab... Can anyone give me advice?

Thanks

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Teanna profile image
Teanna
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KellyInTexas profile image
KellyInTexasAdministrator

acaai.org/news/american-col...

This is helpful information for Explaining the common reactions from flu jab, most commonly a reaction from mast cells de granulating.

About 50% of APS patients have MCAS , an over active mast cell reaction which results in mast cells degranulating and releasing histamine, and other “amines.”

This condition falls under the auspices of immunology- as it’s the primary , or innate, immune system, not acquired.

Only your specialist can answer your specific questions, as they pertain to you and your body.

This is just an interesting starting place.

Thrombosis Uk can answer perhaps questions on enoxaparin. A few people have asked questions there. The concern is bruising at injection site.

Teanna profile image
Teanna in reply to KellyInTexas

Hi Kelly,

I have 2 injections: 1 in the morning, 1 in the evening. Because I have had multiple DVTs & PE’s.... also I’ve had DVT’s when my INR was 4.2 also my blood flows down ok, but does not return up as good with it has turned my legs BLACK because of the

circulation....

As I said in my first message: there is a conflict between my all my docs & my GP.

So it’s a bit scary, I do carry a epi pen.

I also an emergency appointment tomorrow for my liver (it’s to do with all the opiates I was on from all my consultants) but unfortunately they never had a meeting altogether. But they have all apologised, but it’s not fair because I’m the victim...

KellyInTexas profile image
KellyInTexasAdministrator in reply to Teanna

I understood what you said in your first message.

This is simply additional information for consideration regarding the innate immune system’s reaction , ( anaphylaxis) not acquired immune system related .

It’s very complex, and only your doctor can give you advice for your particular situation.

I’m sorry to hear your having trouble with your liver... that’s not good news.

Wishing you a very good productive appointment tomorrow- with a clear plan.

MaryF profile image
MaryFAdministrator in reply to KellyInTexas

This is great information, thanks. MaryF

GinaD profile image
GinaD in reply to KellyInTexas

Kelly you may have just solved a mystery. I went into anaphylaxis twice. Once after a novacaine shot, then ater as after miralax and dolcalax prep prior to a colonoscopy. I see that polyethylene glycol is in miralax. So.... no phizer shot for me? I will research further. Maybe the Moderna does not have polyethylene glycol?

KellyInTexas profile image
KellyInTexasAdministrator in reply to GinaD

Oh interesting! I would really think about looking for a immunologists that has a good handle on MCAS. Your first clue was the cashew allergy...

Dr Jill Schofield in Denver is very good. Also an APS specialist who trained under Dr Hughes.

MaryF profile image
MaryFAdministrator

HI, I agree it is a very good thing to be in contact with your doctor/specialist etc, as only they can help weigh up the risks/benefits, I am in the same position with my children. Best of luck. MaryF

Teanna profile image
Teanna in reply to MaryF

Hi Mary,

As you know I’ve been on here for many yrs & you know how complexed my case is..... I had stopped coming on here as I was doing everything you suggested & I’m still in the same boat as I was from the start being on here... I got so disheartened that I almost had enough, but when the medical board decided that Opiates was the main problem for (my complexed case etc), that’s when it became more conflicting. Now being under 6/7 different medical teams, they all are conflicting, so it’s ok saying ASK, as I pointed out, I never get the same answer..

So I wasn’t being awkward, I was a totally confused patient which I have been for many yrs.

I hope your well,

Keep well, say safe

Teanna

MaryF profile image
MaryFAdministrator in reply to Teanna

We understand, many of us in a similar boat. MaryF

KellyInTexas profile image
KellyInTexasAdministrator in reply to Teanna

❤️ good luck today, again! With you in spirit.

lupus-support1 profile image
lupus-support1Administrator

Only your own physician can give you the right information for you.

With good wishes,

Ros

Teanna profile image
Teanna

Hi Ros,

My GP has now given the

government the option whether to have the vaccine or not.

I had an appointment at the hospital today (emergency), it was horrifying, but I had a scan on my liver etc, & I also asked about the vaccine and the doctor said that my allergies would be to risky for me to have

the vaccine..

so I’m no better off....

please all take care, stay safe, as I said it was horrific in the hospital.....

Thank you all

Teanna

HollyHeski profile image
HollyHeskiAdministrator

Sounds terribly traumatizing at the hospital today, and totally unhelpful replies from your docters about the flu jab.I feel for you, it is so confusing and something we can't advise.

Give yourself a bit of TLC tonight to get over today. Hopefully as more become vaccinated, more information will be forthcoming.

Teanna profile image
Teanna in reply to HollyHeski

Hi Holly,

As u know I’ve always been a complexed case......

I’m chilling out, (trying).......

But I’ve just heard that one of my cousins & her husband are on ventilators, (they are only 50yrs) my other cousin (50yrs) and her son (26yrs), have it, but are in High independence...... It’s so scary

HollyHeski profile image
HollyHeskiAdministrator in reply to Teanna

Really scary, we just have no control over the virus. A very close friend of mine has just been rushed into hospital, she's been fighting at home since Sunday.

🤞 & 🙏 for everyone fighting this virus.

Portwing profile image
Portwing

I had it after my doc said it was fine. All I had was a sore arm.

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