Covid vaccination: Hi all, Interesting... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Covid vaccination

Womanfriday
Womanfriday

Hi all,

Interesting to note that the Pfizer vaccine may be rolled out shortly. Does anyone know if it's OK to take it if you have APS and compromised immune system? I have Primary APS (on Clopidogrel and Fondaparinux) but am also immunosuppressed following a transplant (on steroids and Mycophenolate )

Thanks

Debbie

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KellyInTexas
KellyInTexasAdministrator

I am not sure. ( not with the transplant.)

I do know that if you’ve had a biologics infusion you need to have any flu jab or vaccine ( not live ever, which the Covid vaccines are not) 6 weeks prior . Same applies to after infusions.

I’m about to be switching to IViG from rituximab. It’s also possible I’ll be doing both.

Ivig is every three weeks so I’m not sure how a Covid Vaccine will work... it’s given in two different jabs I believe - two weeks apart.

I’m very interested in your treatment of fondaparinux and clopidogrel. Do you mind if we private message a bit about this? It’s been suggested ( by Professor Natasha Jordan Rheumatologist formerly at London Bridge) that I consider this but I have a few very technical questions.

She said Professor Hunt has a few patients on this combo who fail ( clot through) other more “traditional” anticoagulant treatments.

Thank you very much- still trying to figure it all out. My Texas hematologist just simply said ... no. 😩.

I have to check my INR three to four times a week by vein. My inr is set at 5.5- 6.0 - I feel better at 6.0 - so I can’t use a coagucheck. ( not accurate that high.)

Anyway- that the gist of it- from here we can chat vial private messenger because the details would be very particular.

Thank you...

rThat's fine - I'm actually under Beverley Hunt 😁 Not sure how I direct message you from here so will wait to hear directly from you x

MaryF
MaryFAdministrator in reply to Womanfriday

The fact that you are under Prof Hunt, is a really good idea, she will have good knowledge and also a window into how patients are doing with these shots, this is a new thing and i feel I can't answer it from experience or indeed even my own perspective as my allergies are too extreme for vaccinations. MaryF

Does anyone know what 'serum' is the carrier or what 'adjuvant' is used in the vaccine. I won't be getting any vaccine until all my questions, are answered with backup peer reviewed research. That is my take on the matter, so I guess I'll have to wait until herd immunity has been achieved. I'll continue to look after my microbiome and take D3, K2 and zinc along with my colloidal silver to help with my immune system.I have APS, SLE and Sjogrens and was diagnosed in 1975

It's important to note that there are several different vaccines likely to arrive in next few months, not just different manufacturers but different (completely different) approaches. Some may be suitable for you, some not. Pfizer is mRNA, not just a new vaccine but in essence a whole new _type_ of vaccine (the mRNA research has been going for a while though). It is quite possible the doctors will not know whether any mRNA vaccine is safe for immunosuppressed patients until it is tried (not sure it has been in the trails so far).

I don't have flu jab (any more), something which is agreed with my doctors. The covid vaccines (at least the ones I know about) are not like the flu jab, but I'd still expect to have a conversation with my doctor(s) about whether and which one to have, _in_ _my_ _case_. That last bit is important, I don't think there will be a generic answer for all of us, and even the specific answer may well be "we don't know".

Totally agree. I understand - in my case - that the mRNA vaccine isn't a 'live' vaccine so should be OK. It was developed as part of the Ebola research and has been well tested - but not on people like us!I've had the flu vaccine for years with no issues but appreciate your decision - we're all different!

HollyHeski
HollyHeskiAdministrator

I'm under Prof Hunt and will be asking her the same question at my appointment in January.I suggest any questions be directed to our consultants, as like everything APS is so different and unique to the individual.

I heard on the news that one of the proposed vaccines IS actually live. They said any immunosuppressant patients CANNOT have it. That’s because their immune system is dampened down and so they can’t fight any bugs!

Many of us are sensitive to drugs on top of that. So we need to be very careful.

It is so hard to know what to do for the best isn’t it. I guess u r having to be extremely careful anyway. Stay safe.

I’m on 10mg steroids daily and 200mg of Azathioprine daily as well as loads of other meds - so like you, am interested to see what happens. But the way I look at it is: if everyone else is having it then there will be far fewer people out there to infect us!

Good luck 💋 x

Yes - think a lot of questions to be asked before I have anything. Interestingly the Pfizer vaccine has just been approved in the UK for roll out from next week!Take care 😘

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