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Hughes Syndrome APS Forum

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I’m confused about blood clots in this pandemic Covid virus. I’ve got APS & on a blood thinner 2 injections daily, am I not likely to get it

Teanna profile image
10 Replies

Is sticky blood (that’s the medical term that medical team) good or not for APS sufferers?

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Teanna profile image
Teanna
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HollyHeski profile image
HollyHeskiAdministrator

Hi, good question, answer docters dont know yet.

I've been told by my consultant that I am not more at risk of getting it than anyone else, but not enough data yet to how I will cope with it. Been told to stay at home to protect myself.

Teanna profile image
Teanna

That’s what they have told me but I’ve also got a couple of autoimmune diseases, so it’s better to safe than be sorry. I was shocked when they interviewed Professor Marcel Levi at UCLH, I was due to see him a few days before lockdown, his secretary called and cancelled my appointment, so they must have had the virus then. But it’s so confusing (with the R’s etc). But if u look at the countries Norway, Sweden etc they had it sorted out within a month. It may due to the climate?? But they are back to normal with the odd cases.

Stay safe,

Teanna

Ozchick profile image
Ozchick in reply to Teanna

The Cardiologist ( for my husband) and my Rheumy aren't doing face to face consults - all via phone. Not necessarily +ve for Covid for them or staff just precautionary and if there is a real problem they will see us. I just need a prescription for my Clexane and otherwise felt well-so there was no point in exposing myself or others at the rooms unnecessarily.

Ageingfemale profile image
Ageingfemale

Hiya. Sticky blood is another name for APS. Here’s hoping now more is discovered that will help us too.

Teanna profile image
Teanna in reply to Ageingfemale

Hi, the only reason I said Sticky blood was that one of the politician had said it. As u know, in the war times it was known as Sticky blood.

I was due to have doplar test on my legs (the end of March) as my surface veins are really protruding badly and both legs (up to the knees) are now completely black.

I did ask if I could go for a ride (my carer drives) but was told no. It maybe the Lupus, or under active thyroid. Plus much more, but my heart is great..... I’m suffering badly with loneliness, fatigue, & I’m just scared. I don’t talk to many becoz I’m not aloud to go out.. I was almost looking forward to go out.....I don’t know how long that I will be looking at 4 walls. But there are people worse off than myself, bt I can’t see a way out.

Take care, stay alert.

Teanna

Ageingfemale profile image
Ageingfemale in reply to Teanna

It must be so hard being on your own. Both my husband and I are shielded, it’s 9 weeks since we’ve been out (hubby has MS) he is more or less bed bound, he’s up for 2-3 hours day. At least we have 2 Carers 4 times a day to keep us going. There are areas that have voluntary people that you could arrange to call on you for a bit of company. Try and ring them they are only too happy to help. It is a scary time, I too have heard them talk about sticky blood. Look on the positive side, maybe they will do far more research and may come up with something to help. Any fears you have, don’t hesitate to get on this site and rant or ramble away. We are all in the same boat and someone will be feeling exactly like you. Do take care of yourself. We will get through this. As Colonel Tom says tomorrow will be a good day. x

Teanna profile image
Teanna

Hi, thank u for taking the time to reply, Colonel Tom is a hero, he kept on going, what a fighter. My dad (we also called him our mum) was like that “a fighter & a hero” bt sadly lost him, far to young but he kept the family together through the hard times. Now everyone has gone their own way. I’m now wheelchair bound, I’ve a great carer, but it’s nothing like having your own family calling or pop round (at a distance), but they don’t. All these people that u can call are for the youngsters and the elderly, but nothing for my age group. Sorry to be so dismal. Take care and keep safe.

Teanna

Ozchick profile image
Ozchick

Can you do FaceTime or Skype ? I know it's not the same as a personal visit but at least you get to see a different face.

Teanna profile image
Teanna in reply to Ozchick

Hi, My children are very strict about my grandchildren’s schooling so the daytime is out. If I was to call it would be around 5pm but due to my illnesses my carer (she has her hrs throughout the day/night) so the earliest time would be around 6ish, but that’s to late to chat to my grandchildren. Weekends are their family time. I do find it harsh bt everyone has their own ways of dealing with this virus. I’m hoping that once this is over, I’ll get to see them again. I miss them sooooo much.

Thank you for yr advice,

Take care

Teanna

Christine7 profile image
Christine7

Hi I have heard that some anticoagulant therapies are not working with covid 19 but not able to find out which ones. I’m taking warfarin so you would think if we contact it we stand a good chance however because it affects immune system who knows. My GP has sent letter and as I’m in care I can’t work for 12 weeks.

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