covid vaccines: I am still undecided... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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covid vaccines

patientpat
patientpat

I am still undecided about whether to have the Covid Vaccine at the moment. I have Lupus and APS as well as some other autoimmune problems going on.

My issue with it is that from what ive read no trials/data have been done on Autoimmunity. The scientific data available as i understand it is from 'healthy volunteers' as that is the baseline they wanted to start from.

Its only just been rolled out to other groups so no definitive data on autoimmune problems.

Both vaccines affect the immune system but no one really knows yet what impact that could/might have on Autoimmunity. Might they increase the inflammatory effect?

Then of course more vaccinations are likely to be needed.ie 2nd one,booster and possibly annual.

These are serious issues for me that no one as yet has an answer to.

37 Replies
lupus-support1
lupus-support1Administrator

You have to make that decision. I recommend you discuss this with your consultants.

However, IMHO, it would not be a good idea not to be vaccinated.

I have discussed this with my rheumatologist & oncologist-haematologist. Those who are immunocompromised are in the danger zone of being the most vulnerable.

I cannot have the vaccine for at least 3 months after my last chemo infusion, which will be March. I can assure you, I will be getting the vaccination (Pfizer)

Elsewhere, I have posted the most recent results worldwide on LUpus Patients Understanding & Support (LUPUS): healthunlocked.com/lupus-su...

It is important to get the facts & not listen to the numerous conspiracy fantasies which cause people not to get this vaccination. I understand that this is a very anxious time for everyone.

Always consult with your medical team. Do not listen to anyone else, including me!

Stay safe & be well!

Ros

Hello

to all of you who replied to me and thank you for your valuable advice. Like you say there is a big difference between conspiracists/anti vaxxers and people like myself who are trying to make an informed decision and being very cautious about what goes into their body when i'm already struggling with major health issues.

Your response granmyty was very reassuring.

Many thanks to you all.

MaryF
MaryFAdministrator

Hi, please chat with your main consultant and your GP, I have serious mast cell problems and can't even have the Flu jab, but a lot of people on here with Lupus and Hughes Syndrome/APS have already had their jabs and are doing well. It is a conversation you need to have, and probably you will be fine, but we can't advise people individually, our charity has had some good posts on the Facebook Page for GHIC regarding this. I am in consultation with my GP practice and my local GP Federation regarding which vaccine my young people should have, as they have allergies also but not as serious as mine. There is a big difference between anti vaccers and those being cautious before they proceed with a vaccine. I hope to hear back about my children next week. Best of luck. MaryF

I have APS and Lupus and have had the moderna vaccine. I consulted with my hemotologist before getting the vaccine because I have many allergies and she said I should have the vaccine but only with Moderna. I only had a sore arm for a day and no other reaction. Check with your doctors that know your problems and let them advise you.

kiminabmw
kiminabmw in reply to granmyty

Are there specific reasons that your Hemotologist gave for only wanting you to have Moderna?

granmyty
granmyty in reply to kiminabmw

Yes because I have an allergy to shell fish and have many reactions to various medications. Hope this helps your decision.

kiminabmw
kiminabmw in reply to granmyty

OK, thank you so much!! My husband (doesn't have APS) has a severe shellfish allergy, so this is great information for us to know, thank you.

ThePATexan
ThePATexan in reply to granmyty

Do you typically have any reactions to the flu vaccine? We have been very curious about others getting it and any past reactions.

Ray46
Ray46 in reply to ThePATexan

I have reacted badly to flu vac, or at least been ill for months after it (which I know isn't exactly the same thing...), in previous years I have not had the flu jab (agreed with doctors) for that reason. I will, however, be having the covid one (not sure which, I will take what's offered), this week. I'll let you know how it goes, and which jab I get, _but_ we are all different.

I've had flu before (and I know it might be worse now), I've also seen and heard what covid does, from a safe distance. I can still see the effects in my wife almost a year on, and there are several who we know who are worse, some of them now dead. I know people do die from flu, but I can't recall anyone I know dying of flu in 50 years, where covid is multiple. It just isn't the flu, it's a whole 'nother ball game.

Ray46
Ray46 in reply to Ray46

Had Pfizer jab yesterday, no questions about warfarin or INR which slightly surprised me, but I did self-test that morning (low end of range) and call it in, and the computer systems are linked so they may already have known I was ok. Health history questions were focused on any previous anaphylactic responses.

Pain on injection was maybe less than a blood draw, but more pain after, sleeping on that side wasn't happening (no visible bruising though). Overnight got cold sweats and racing heart beat, woke me up quite a bit. Very tired this morning, felt like a medium to bad hangover (without the fun bit before), arm is heavy and painful but usable, mild headache, pain isn't bad enough to really need to take painkillers.

Other than fatigue this morning, nothing like APS symptoms or flare, no cognitive issues or brain fog noticeable.

This was in one of my newsletters this morning.

healio.com/news/rheumatolog...

hello Piscesdreamer,

Thank you for sending the link to this very helpful scientific article about the pro's of having the vaccine and the cons of not. I now dont have any hospital consultant advising me as was discharged from Guys during the Pandemic so its been a hard decision for me to come to on my own and i'm not quite there yet but this article has certainly helped.

Lure2
Lure2 in reply to patientpat

Try to talk to a Specialist of autoimmun illnesses at Guys. Someone have diagnosed you (there?) and I also wonder if you are on Warfarin. If you are on Warfarin you should not have a too high INR when taking the vaccination-shot. I live in Sweden and we still wait for our vaccin here.

patientpat
patientpat in reply to Lure2

Hi Lure2,Thanks for your reply. I was under Guys for a few years until they discharged me just prior to my Appointment last year during the Pandemic.

I wrote to them asking them not to discharge me but they ignored my letter. I'm not on Warfarin just Aspirin AND Hydroxycholoroquine.

cheers.

Hi I only have primary APS so I do understand my decision is more straightforward. I checked with my consultant, who had no concerns at all. I’d also add that, whilst it was a year or so before my APS diagnosis I’ve had the full suite of tropical disease vaccinations as I work in Africa. I had 5 in a single appointment, with no ill effects other than it not being much fun.

patientpat
patientpat in reply to GillyA

Hi GillyA,

Thats gd to hear that it was a such positive experience and no adverse reactions. I have no Medical Consultant now to discuss with other than a GP who will just give me the 'standard response' instead of a Specialist who knows and understands my condition and can answer my specific concerns.

Thank you.

I have had my first dose of Pfizer with no side effects. I have CAPS, CKD, and I have an immunoglobulin G deficiency. My doctor ordered labs before my first shot and a week after my second shot.

I had the following tests:

immunoglobulin A,G,M

CBC, DIFF

Complement C3, C4

We should have our second vaccine this week and a repeat of tests the following week

Hi Thick_Blood,

Sorry to hear about your health issues and pleased to hear the vaccination went well. Thick Blood is a major concern for me especially as i'm in my late 60's and had APS/Lupus for many years.

I dont have your Immunodeficiency problems but maybe my GP will arrange a blood test as a 'baseline' to allay my fears.

Thank you for sharing your experience. Wish you well.

Any concerns with taking the vaccine with the immunoglobulin G deficiency. My nephew (CAPS) has very low IGA, IGG, IGM. He was getting Plasmapheresis and IVIG for over 1-1/2 years, but had improved enough for his Doctor to stop Plasmapheresis and IVIG in November 2020, to see how his body would do without it. But his Immunoglobulins are so low that the Doctor just restarted the IVIG. My nephew is also still taking a steroid (weaned down from 80mgs, to now 5mgs) as well as CellCept, and Plaquenil. All his Doctors (Rheumotologist, Hemotologist and Primary Doctor) all say he should get the vaccine, so just wondering what your thoughts are with low immunoglobulins.

I have had plasmapheresis and IVIG , but luckily it has been 10 years since I last had it. My immunoglobulin G is 366 but the normal range is 610-1600. Also my current platelet count is 134. I also take Plaquenil twice a day ,Pentoxifyline 3 times a day and 150mg of low weight Heprin.

My doctor thinks it’s better to get the shot and monitor 🩸 blood. So shot two on Wednesday. I’ll let you know if my blood work shows anything interesting the week after.

Thank you so much! I look forward to hearing from you. Be Well.

Well I had Second Pfizer vaccine 💉 this morning. So far only a mild headache 🤕. I will keep you up to date. Blood test follow up next week.

That is great news!! A mild headache doesn't sound too bad, in comparison. Looking forward to your test results. Be Well.

Well it has been 24 hours since my second Pfizer vaccine. And I don’t feel so great, the arm where the injection site was is painful, my lower back is painful. I have an upset stomach and a slightly elevated temperature. Still a small price to pay but it’s not as easy-going as I thought. I’ll keep you up to date.

I hope you feel better soon!!! Yes, small price to pay, but it still isn't great to not feel good. Please keep me posted. Feel Better!!!

OK its Saturday😀 its been 72 hours since the second Pfizer Vaccine. Day after was tough, listless , tired and weak. Some other had said this. Yesterday was better not perfect and today i feel normal(for me) I had blood tests yesterday and a couple things are low but not out of line for me. My WBC is 3.97 and platelet count is 144(which is up from before the vaccine), Creatinine is 1.2 also normal for me. So my feedback from a CAPS patient with low immunoglobulin G and inflammatory response is you should do it. One persons view. My healthy wife had it as well at the same time and she is fine.

That is wonderful news!!

My specialists have the same concerns, with autoimmunity and inflammatory response, and have said it needs more testing before they would feel safe with me getting one. They are watching the data on each individual makers vaccines too. Even though I usually get the flu shot every year, I always have a rough week of negative effects and swelling after them.

I can only speak for myself; I don’t have your conditions. I have been diagnosed with MS sometime ago. I received dose number one last week and plan to get dose number two in March. True that it is a new vaccine, but at least the MS association has not said anything bad about it. I’m willing to take that risk. I would (and did) take that risk for polio And pneumonia and other types of diseases that have terrible death statistics. Have you discussed this with your own Physician?

I understand how you feel and it’s a horrible decision to have to make. I have MS & APS. Around 15 years ago before APS came onto the scene I had a regular yearly flu jab for the first and last time. It made me so ill that I had to phone for district nurses to come to me. I had to be catheterised. My worry is that the Covid vaccine will affect me more because my immune system is already weak. My MS is worse than it was 15 years ago and now I have APS to think of. To be honest I don’t want it because no side effects are known, different variants appear but it doesn’t seem the vaccines available now can necessarily keep you safe. I’m terrified that I’ll get taken into hospital and never come out. It’s a horrible situation to be in but it should be a personal choice and not ‘forced’ upon anybody,

Hi Stereolover,

I understand exactly what you say and your understandable concerns are most valid. Your very bad experience to the Flu jab on top of your MS and APS is clearly a major worry when it comes to having either of these vaccines and that makes it so hard to make the decision to take it.

There is very little to no data on Autoimmune disease so far but that will happen in the future. All they can say is that whilst it wont prevent people getting the Virus, there have been no mortality from it or severe infection needing hospitalisation.

It is a dilemna for people like me and yourself to balance the risk of getting covid agaisnt the possibility of an adverse reaction to either of the Vaccines.

I realise that i need to think more rationally because of this. We want to be certain that it will not make our condition worse but we cant be. It's the unknown. we want to feel safe.

There are some contraindications which i have come across. The Psfizer Vaccine could could potentially cause a 'flare up' of the interferon pathway involved in Lupus so i am avoiding that.

If we were more certain that it wouldnt cause such bad reactions then the decision would be much more easy to make..

From what i've read it seems that a 'live' virus vaccine should not be taken by people in immunocompromised groups eg the nasal Flu jab but many of these people are having/had the Oxford which uses an 'inactivated' virus that cannot cause infection and experience no harmful effects.

I hope you manage to speak to your Health Adviser and the MS association as well. Build up your own immunity as much as you can so that if you do decide to have a vaccine you will be better able to cope with it. I wish you well.

Hi. My vitamin D level is great. I eat healthy. I had flu shots for years, as I am in the medical field. I no longer take the flu shot. I had Covid last month and did well. ( age 55) I have decided not to get the vaccine. I want more studies. I know many people who have gotten the vaccine and have done fine. I want to know long term effects of the vaccine. I am not an anti-vax person, just a person who wants more studies first :).

Ray46
Ray46 in reply to 25pooky

Well over 100million doses given so far, and in the UK at least they've mostly gone to the old and ill/vulnerable, studies on the effects shouldn't be too far away.

Stereolover
Stereolover in reply to 25pooky

Hi, it’s lovely to read from somebody in the medical world. I know 100% that my GP and consultants will encourage me to have it but no, I’ve made up my mind. I don’t trust any of the vaccines and although people who have had 1-2 jabs are feeling fine, that’s now and not in the near future. Thanks again and take good care.

25pooky
25pooky in reply to Stereolover

Yes. I am waiting. It was released for emergency use only. I am not an emergency

Yes

Hi 39yrs Old Do You Know What Group APS Patients Fall In ? Would It Be Underlying Health Conditions Group 6 ? Cheers In Advance

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