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Hughes Syndrome APS Forum

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Quick update from Previous Post

Zezes-nan profile image
6 Replies

Just had a phone call from the Anti-cogulation team who have been really reassuring and booked me in for a test in a couple of weeks. The Nurse checked my records and said as my inr has been really steady for nearly 2 years she was happy to leave me for that long and to rest up and keep my fluids up. I was able to ask her about cough medicines for the hacking cough (which seems to be subsiding) and she said to try to stick to natural remedies hot drinks with honey, avoid diary products BUT if I was worried to ring 111 or my GP and they can arrange for someone to check me . The person I spoke to before was right the service is stopping probably mid July and all future INR checks will be done by the local GP surgeries. She said its a ridiculous move as the GP's in my area have always been reluctant to do warfarin checks which is why the anti-cogulation service was sent up and every clinic is double booked due the large number of patients using the service . So it really doesn't make sense.

Thank you to everyone who replied to my [previous post you all made me feel a little calmer

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Zezes-nan profile image
Zezes-nan
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6 Replies
HollyHeski profile image
HollyHeskiAdministrator

So glad your getting the support and your cough is improving.Wishing you a speedy recovery and fingers crossed the GP INR testing goes smoothly.

Helsbels_ profile image
Helsbels_

I've just recovered from COVID. It was my second time, and it was a lot milder (probably due to the vaccines and booster). I've found my INR elevates when I take paracetamol - I don't know for sure that's what it is, but there does seem to be a pattern. In my area, INR checks at pharmacies come under the GP umbrella. So I was transferred from the hospital anticoagulant service, and now have my checks done at a local chemist (Day Lewis Pharmacy). I don't know if that's a common thing, but the only way my GP can arrange INR is through the local blood testing centre (my INR has always been consistent with the venous vs coaguchek machine). Wishing you better soon, and I hope you're in range when you get tested.

Zezes-nan profile image
Zezes-nan in reply toHelsbels_

Thanks for your reply, our anticogulation service is done a local medical centres but its all changing around mid July. I'm booked in for the 1st and if necessary on the 8th after that I haven't a clue whats going to happen.

Ray46 profile image
Ray46 in reply toZezes-nan

One thing to watch for with Covid is after-effects - not just the typical long-covid stuff that is talked about but also that it seems to trigger flares in existing autoimmune conditions, even if they were in remission.

Friend of ours with bad Chron's got covid about three months ago after 2 yrs of shielding etc. At the time she was quite sanguine about it "just seems to be a bad cold" "had to get it sometime". Now her Chron's, which was in remission (after most of her guts removed and a perm stoma...), has come roaring back and she's looking at, best case, few days in hospital on IV steroids because max oral dose isn't touching it.

Others on here have complained that INR is very variable after, I strongly suspect APS antibody levels are flaring/very variable too.

Zezes-nan profile image
Zezes-nan in reply toRay46

Thanks Ray46, I have a few other condtions apart from APLs so hoping I don't have any flares.

Ozchick profile image
Ozchick

Good news!

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