Positive Covid Test: Hello I’m 5 days... - Hughes Syndrome A...

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Positive Covid Test

Vailea profile image
15 Replies

Hello I’m 5 days in following a Positive Covid Test and so far doing Ok . I have flu like symptoms congestion then runny nose. No respiratory problems so far . I am fully vaccinated with Pfizer including 2 booster shots . The Nurse will come and check my INR tomorrow at home . I’m hoping it hasn’t been too badly affected as I’m normally within my range of 3 to 3.5 on 6 mgs Warfarin . I must admit 2 years ago I was so worried about getting Covid and it would probably have been much worse then . I’m hoping there are no long term effects just wonder if anyone has experienced them . Thankyou

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Vailea profile image
Vailea
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15 Replies
KellyInTexas profile image
KellyInTexasAdministrator

Haven’t had “ confirmed” Covid- but did have suspected Covid pre vaccine days.

I did very well, but anectodal at best.

All in all, most APS patients have fared well, according to reports available, especially the ones not on hard immune suppression like mycofenolate, etc.

Glad you are doing so well!

Hoping others have good news for you.

Vailea profile image
Vailea in reply to KellyInTexas

Thankyou I’m very reassured bu all the replies and appreciate all your input

WendyWoo50 profile image
WendyWoo50

Sounds like ur doing really well. Just drink lots, get fresh air (open window) rest, move around as u can to keep joints going.

Check what you are supposed to do with your meds. I was told to stop Azathioprine (immunosuppressant) and double my steroid dose. (Then when over Covid slowly come down on steroid dose until back to normal and restart Az.

My experience was much the same as you. But as I posted separately - all my pain disappeared as did my headache. I was less fatigued. I’m largely still benefiting from Covid (with the exception of a 2nd chest infection.

I hope Covid sends you into remission. I’ve not been in remission for 29 years. So I’m happy! Be well! 💋 x

Vailea profile image
Vailea in reply to WendyWoo50

Thanks Wendy had my INR done today and within my range so happy and feel much better .Pleased you have had good outcomes

Fra22-57 profile image
Fra22-57

I have had covid which was mild really,feeling woolly headed and dizzy,coughing at night and generally yuk so had to rest a lot.I am immune suppressed so I omitted my biologic injection for a week as it lowers immune system so gave my body an extra fighting chance.I was initially sent letter to say I could get anti viral but then was refused but in time after 10 days became negative in time to go on holiday.I was not fortunate enough to be offered nurse to come out and check my INR so had to dose by guess work.I haven’t had any lasting effects and have now had 5 vaccines .Wish you a speedy recovery 😷🤒

Vailea profile image
Vailea in reply to Fra22-57

Thankyou I’m pleased you don’t have any lasting effects . I’m very lucky to have the nurse come out and my INR was in range xx

GinaD profile image
GinaD

I'll start out by confirming I have APS and have been on warfarin for 20 years.

I had an extremely mild case of covid this past March. Pollen count was high in my area, so I would not have even attributed my symptoms to covid had I not known I had been exposed to someone who had tested positive. My doctor, who has noted from the outset that covid symptom have similarity to APS, put me on paxlovid, and I simply sailed through a very mild course with no after effects. At a recent group dinner ( first in over 2years) we all compared notes and agreed that each of us knew more people who had tested positive over the past few months, but none of us knew anyone who had been very sick or died from it. In comparison, most of us knew someone who had died earlier in this pandemic trial. So, we ( not scientists , just friends) concluded that the current strain, while very contagious, is also fairly mild IF one has had the vaccinations.

Just like the flu can be horrid and life threatoning if you have not keot current with your flu shots, but if you are up on your shots, the severity and course of the illness will be much less severe. Welcome to the covid endemic days!

And good luck! I hope you have smooth sailing! My INR wiggled just a tad ( as it has with other ailments) but nothing , as they say to " write home about."

Vailea profile image
Vailea in reply to GinaD

Thankyou x INR was in range today and I’m feeling better . I think we are lucky in that those poor people who had it in the beginning had the more serious strain without the benefit of vaccines . Perhaps that Coronavirus doesn’t like our APS or Warfarin anymore than we do ???

Ray46 profile image
Ray46 in reply to GinaD

Well, the day I read your post I sort of agreed - with some caveats that Covid still seems to be worse than flu/ I've known plenty of people who've had it recently and still had in effect a mild-medium flu, week or so off work (ill, not isolating), and in some cases month or two to fully recover afterwards. I also know others who are catching it 2-3 times a year, something flu doesn't typically do. All those were fully jabbed healthy people, no pre-existing conditions.

What does that mean for us? My guess was a couple of week really ill at home, with a chance of hospital, but not life threatening.

Then that night my wife told me there had been another covid death in our circle of friends. An old school-gate contemporary of hers who had moved away but she was still in contact with on social media. Would be same age as us, so likely early 50s maybe late 40s. Dead of covid, in the past week.

Yes she had serious pre-existing health issues - as we all do here.

Yes she would also have been immunosuppressed - as are many of us here.

She would also have been (best guess, I don't know full details) entitled to 4th (2nd booster) jab and covid anti-virals, here in the UK.

Whatever she had - it didn't work.

I don't know what the age of endemic covid is going to mean for us, but I think we could be looking at immunosuppression being considered a far higher risk by doctors, and possibly unavailable to some of us who might have benefited from it pre-covid. Cancer treatment will probably continue to come with strict isolation requirements (and probably it will continue to be the case that no one can explain how that works if you have school age kids in the house). Oh, and the era of routine solid organ transplants might actually be over, or paused at least until we get better vaccines / treatments.

Vailea profile image
Vailea in reply to Ray46

Thankyou for your reply Ray and I’m so sorry for the loss of your friend . I live on a small Caribbean Island and we had very few cases inthe first 2 years with only 2 deaths and they had co morbidities . Our population is around 60 , 000 and once we opened up to tourism and travel for residents (even with strict protocols ) our cases skyrocketed . The cruise ship industry being allowed back in March sent it even higher . We were in a lovely bubble for a long time . I’m awaiting my exit tests results today with hopes to fly home to Uk on Friday .

GinaD profile image
GinaD

This is all so strange! Certainly not what we have experienced in our life times! All we have to go by is history of previous pandemics and what science can tell us now. The only parallel in history I can recall is the 1910s flu epidemic. My grandfather was a Western Union telegraph boy and he learned to toss small pebbles on windows of apartment buildings to attract someone's attention. When they opened the window and angrily asked why he was throwing pebbles, he would explain he had a telegram for "So and So" and could you please ask So and So to come down to get it. You see, my grandfather knew that if he happened to be in the building when a sheriff deputy nailed a " Quarantine. No entry," sign on the door that would mean he was stuck and could mot leave to go home.

LindaMorrell profile image
LindaMorrell

I too have had Covid the first night I must admit was horrendous. But the rest of the time over 2 weeks was like very bad flu and cold symptoms. I had 3 vaccines and one booster all Pfizer . Just about to get my 2 nd pfeizer booster. All in all no serious effects lingering. No respiratory issue. My inr stayed steady. Wishing you good luck

Vailea profile image
Vailea in reply to LindaMorrell

Thankyou Linda

rankin1st profile image
rankin1st

So glad nurse is coming out I just had conversation with GP as tested positive for COVID was due to go for INR as it was 4.8 (range 3) but cancelled appointment no idea what warfarin should be taking tomorrow no offer of a nurse just cancelled appointment!!!! So fed up

Vailea profile image
Vailea in reply to rankin1st

I had my INR checked yesterday as going on a flight tonight . It’s 4 so a bit out of Range they attribute it to my taking Panadol with the Covid . I feel fine and they adjusted my last nights dose accordingly . As I’m flying 12 hours I’m not too worried it’s on the higher side my worry was it would be too low x I hope you get some care or information from your Dr .

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