Help I'm confused!

[Sevenstar]

So now I really don't know what to do I've had my first and my second is overdue because there is so much confusion! What have all you other APS folk done please ?

[MaryF Administrator]

Hiya, this must be a decision made between your GP and your main specialist, this is what I have done, we are due our second jabs today with all of those people involved in the decision, as every person is different. Best of luck to you. MaryF

[Sevenstar in reply to MaryF]

Thanks Mary, hope it goes well ! My GP really is not helpful because he doesn't really know I suppose! I think I will just have to bite the bullet and get on with it !

[MaryF Administrator in reply to Sevenstar]

Do email your specialist, (or their PA's address), marked for them as urgent, I did that with all of mine, and got some joined up thinking. MaryF

[Sevenstar in reply to MaryF]

Will do thanks again 🥰

[Dot69]

I had the Pfizer vaccine which I was advised to have I was very apprehensive about any of the vaccines but was reassured from doctors, Warfarin clinic etc that I was ok to have the Pfizer

[Davideccroft]

I had my second Pfizer jab last week. No issues first jab. Second jab felt tired for 2 days but I had been moving half a ton of bricks from front to back garden. INR did increase a little first jab. No issues second jab. Job done. I’d also done a lot of research and weighed up odds. Also been taking multivitamin fizzy tablets for last year. And home made chicken soup.

[RockyG in reply to Davideccroft]

Hi all, have been diagnosed with the APS last year. Been through two massive blood clotting events. Stable now for 8months. I took the Moderna Vaccine first shot 1 week ago. So far no side affects. (36yr old male)

[Sara_A]

I have APS and lupus and am on triple immunosuppressants I had the Pfizer vaccine 1st one back in December and 2nd one 3 weeks later. I'm 42 years old I had it early as I'm a nurse and got in with the 3 wk gap just b4 they announced that they were extending the gap.I'm only on clopidogrel not warfarin.

I was absolutely fine, though I was expecting to get ill as I usually have a couple of days of 'flu' like illness after having the flu vaccine (impossible I know! As it's not live!)

My colleagues all fit and healthy did become unwell for 24hrs after the 2nd dose with fever and joint pain ironic really that the lupus patient is fine!!

As far as it being given late all u can do now is get it done as soon as u can once u have decided if to have it.

Drs cannot tell you to have it or not they can only give u the information that is out there for u to make an informed decision. At the end of the day its patient choice and as long as u know the facts (well the only facts we have!) Its up to us to make that choice.

[Sevenstar in reply to Sara_A]

Thank you Sara that's valuable info , I'm glad it worked out , I felt as if all my stuff flared after the first and everything is still irritable ! Tough but not as bad as COVID I guess ! Many thanks fir the info , good to hear !

[Elfie1]

Hi ,I had AZ in march then was told can't have second dose ,so had Phizer on Friday. Wasn't so well day after with joint pain etc. but fine now. Hope it goes well for you .All the best Elfie

[Sevenstar in reply to Elfie1]

Thanks for that Elfie , good to know that was a option , hope you feel ok now !

[Cinn987]

Hi, such a dilemma..

I had first AZ 14 weeks ago. Every side effect in the book for 10 days then a good day then it started again for a week, could barely function. Knife like pain right lung couldn't breathe in or lie down..

Had to use 2 inhalers which I only usually use aug/September. Pollen.. Gp did D

Dimer, said ok. INR 4.8, didn't have scan or platelets checked....10 weeks in total before I felt well. The last month I've just been exhausted all the time... consultant says no to second dose.... had eye problem. Hearing in right ear kept fading in and out. Oh everything was going on

To suggested Pfizer yet there are no completed trials with evidence in Lancet saying worse systemic effects mixing as and Pfizer. Terrified of introducing a second Az dose and going into complete systemic inflammatory response again. Yet terrified of covid. Asthma bronchiectasis raynauds parathyroid disease arthritis etc etc. Just in tears with it all. Feel both are far from ideal

[Sevenstar in reply to Cinn987]

Oh Cinn I'm so sorry 😞, that's absolutely rotten, what choices !I completely sympathise with you as Im 99% certain the first one threw me into the flare I'm still in : months later ! I really hope you feel better soon !

[Cinn987 in reply to Sevenstar]

Thank you I don't know which way to turn. Been up all night again. I hope your body tears soon. Sure it's done same to me

[bluebell99]

My first AZ jab was pretty horrendous for about 24 hours with bad neck pain, headache and general bone pain. I was also sick so missed a dose of warfarin. I had fatigue for about 4 days, metallic taste and then gradually grew better, it took about a week in all.

I was dubious and fearful about the second jab but it went well, no pain anywhere or sickness, slight fatigue but that is all, never even had a spot on my arm!

I filled out the "yellow card" scheme on GOV. UK to report my first jab reactions.

My INR was low after the first but expected that after missing a day but there has been no problem with INR after the second jab as I remained quite well.

Better that than dealing with Covid.

[Sevenstar in reply to bluebell99]

Good to know thanks for replying! Glad you are feeling ok now 👍🏻

[donnabrain]

I have had both of mine.

[Sevenstar in reply to donnabrain]

AZ Donna ? No issues?

[donnabrain in reply to Sevenstar]

Az.First one 24 hrs of feeling fluey and as though I had been kicked in the ribs, followed by a further 24 of just " washed out"

Back to normal the following day.

2nd. Mildly fluey for 24 hrs, and tired for a couple of days.

Mild flare after first, but not second

[Sevenstar in reply to donnabrain]

Thanks , that's reassuring ☺️

[Herbs77]

I’ve had both vaccines via Pfizer.

[nyctapdancer]

I had Pfizer for both doses. No issue but a sore arm after the first one. Fever, chills, backache after the second, for about 36 hours and nothing else. Risk/benefit analysis says get vaccinated.

Seriously, so little is known about APLS by the vast majority of drs. So I wouldn't expect them to know about the vaccines. I do know that if I got Covid, I'd be in big trouble.