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Antiphospholipid syndrome (APS)

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Antiphospholipid syndrome (APS)

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2,993 public posts

Hello. New to Group

I have been diagnosed with Mixed Connective Tissue Disease, Interstitial Lung Disease and Antiphospholipid Syndrome. As MCTD is rare I cant find a group for that specifically but since i can have many of the same symptoms as someone with Lupus I might be able to get some helpful information.
I have been diagnosed with Mixed Connective Tissue Disease, Interstitial Lung Disease and Antiphospholipid Syndrome. As MCTD is rare I cant find a group for that specifically but since i can have many of the same symptoms as someone with Lupus I might be able to get some helpful information.
reddogger profile image
reddogger
in LUPUS UK

Who has CAPS (Catastrophic antiphospholipid syndrome )

Hi I am wondering who on here has CAPS, and has done Rituximab? Even better if you are from Canada and have got this treatment, and was able to get it covered under insurance, or funded by your provincial health coverage. Also if anyone has supporting documents that would support this as a successful
Hi I am wondering who on here has CAPS, and has done Rituximab? Even better if you are from Canada and have got this treatment, and was able to get it covered under insurance, or funded by your provincial health coverage. Also if anyone has supporting documents that would support this as a successful
Skyllark profile image
Skyllark
in Hughes Syndrome APS Forum

Live Q&A with Dr Arvind Kaul about Antiphospholipid Syndrome on Thurs 23rd Sept at 3.45pm

Consultant Rheumatologist and GHIC Chairperson, Dr Arvind Kaul, will be live for a Q&A on Thursday 23rd September at 3.45pm about Antiphospholipid Syndrome (APS).
Consultant Rheumatologist and GHIC Chairperson, Dr Arvind Kaul, will be live for a Q&A on Thursday 23rd September at 3.45pm about Antiphospholipid Syndrome (APS).
Chanpreet_Walia profile image
Chanpreet_Walia
Administratorin LUPUS UK
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For those with secondary APS

https://www.google.com/amp/s/www.docwirenews.com/vte-knowledge-hub/effectiveness-and-safety-of-the-direct-oral-anticoagulants-in-non-triple-positive-antiphospholipid-syndrome-without-prior-arterial-thromboembolism/amp/
https://www.google.com/amp/s/www.docwirenews.com/vte-knowledge-hub/effectiveness-and-safety-of-the-direct-oral-anticoagulants-in-non-triple-positive-antiphospholipid-syndrome-without-prior-arterial-thromboembolism/amp/
Roarah profile image
Roarah
in LUPUS UK

Ramipril

Hi, I have Antiphospholipid syndrome (APS) and on warfarin because of repeated clots in my lungs and just started ramipril for high blood pressure. My question is I am having the side effect of pins and needles since starting the high blood pressure medication ramipril.
Hi, I have Antiphospholipid syndrome (APS) and on warfarin because of repeated clots in my lungs and just started ramipril for high blood pressure. My question is I am having the side effect of pins and needles since starting the high blood pressure medication ramipril.
Kev667 profile image
Kev667
in High Blood Pressure Support

Hughes/Antiphospholipid Syndrome and Dysautonomia - Graham Hughes, MD

Antiphospholipid syndrome is also known as Hughes syndrome, named after Professor Hughes for his role in discovering the disease. https://youtu.be/QKDj1ggQASQ
Antiphospholipid syndrome is also known as Hughes syndrome, named after Professor Hughes for his role in discovering the disease. https://youtu.be/QKDj1ggQASQ
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support

Coughing is my life!!

Hey Everyone, So I have lupus, asthma, antiphospholipid syndrome and lots of other rubbish. I have got such a bad cough with my asthma it's got worse over the years, I have relvar eliptar as my preventer and salbutamol as reliever using that with a spacer for more accurate inhalation.
Hey Everyone, So I have lupus, asthma, antiphospholipid syndrome and lots of other rubbish. I have got such a bad cough with my asthma it's got worse over the years, I have relvar eliptar as my preventer and salbutamol as reliever using that with a spacer for more accurate inhalation.
Danielle2419 profile image
Danielle2419
in Asthma Community Forum

Safety and tolerability of mRNA COVID-19 vaccines in people with antiphospholipid antibodies

Only one patient with thrombotic antiphospholipid syndrome and a known history of mild thrombocytopenia (110 000/mm3), who was on long-term vitamin K antagonist therapy, reported the occurrence of self-limiting purpuric lesions on her calves 10 days after the second dose.
Only one patient with thrombotic antiphospholipid syndrome and a known history of mild thrombocytopenia (110 000/mm3), who was on long-term vitamin K antagonist therapy, reported the occurrence of self-limiting purpuric lesions on her calves 10 days after the second dose.
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support

Advice

syndrome as she had never heard of it Now the latest advice given to my GP to control my fluctuating INR is to take a very high level of warfarin and take a small amount of prophylactic vitamin K Has anyone heard of this?
syndrome as she had never heard of it Now the latest advice given to my GP to control my fluctuating INR is to take a very high level of warfarin and take a small amount of prophylactic vitamin K Has anyone heard of this?
mully profile image
mully
in Hughes Syndrome APS Forum

Interesting article from Beverley Hunt regarding DOACs in APS

Apologies, the link didn’t work … you will have to look it up ;) Ray x Direct oral anticoagulant use in patients with antiphospholipid syndrome and unprovoked venous thromboembolism: a single centre experience Andrew J. Doyle, Beverley J. Hunt, Anicee Danaee, Gavin Ling, Michael J.
Apologies, the link didn’t work … you will have to look it up ;) Ray x Direct oral anticoagulant use in patients with antiphospholipid syndrome and unprovoked venous thromboembolism: a single centre experience Andrew J. Doyle, Beverley J. Hunt, Anicee Danaee, Gavin Ling, Michael J.
RazD profile image
RazD
in Hughes Syndrome APS Forum

Newbie!

Lupus with a side helping of antiphospholipid syndrome and spectacular myosotis. In the process of upgrading from mycophenolate to rituximab, any suggestions, hints greatly appreciated. Looks like an amazing supportive group ❤️
Lupus with a side helping of antiphospholipid syndrome and spectacular myosotis. In the process of upgrading from mycophenolate to rituximab, any suggestions, hints greatly appreciated. Looks like an amazing supportive group ❤️
sarah_lupus profile image
sarah_lupus
in LUPUS UK

Advice please from fellow suffers.

Prior to this my hematologist who treats my Sticky Blood condition ( Antiphospholipid Syndrome ) prescribed me folic acid. Seeing as I am no further forward in getting a diagnosis and have been on folic acid for some time is there any point in looking for enlarged blood cells ?
Prior to this my hematologist who treats my Sticky Blood condition ( Antiphospholipid Syndrome ) prescribed me folic acid. Seeing as I am no further forward in getting a diagnosis and have been on folic acid for some time is there any point in looking for enlarged blood cells ?
Jillymo profile image
Jillymo
in Pernicious Anaemia Society

Cognitive dysfunction and associated neuroimaging biomarkers in antiphospholipid syndrome: a systematic review

antiphospholipid antibodies (aPL) (including primary antiphospholipid syndrome (APS) or APS associated with systemic lupus erythematosus (SLE)).
antiphospholipid antibodies (aPL) (including primary antiphospholipid syndrome (APS) or APS associated with systemic lupus erythematosus (SLE)).
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support

Division of Rheumatology Grand Rounds Speaker: Jason Knight, MD Title: Neutrophils in Antiphospholipid Syndrome and COVID-19

UW Division of Rheumatology Grand Rounds, Dr. Jason Knight - 6/2/2020 https://youtu.be/eXnpxCK1bco
UW Division of Rheumatology Grand Rounds, Dr. Jason Knight - 6/2/2020 https://youtu.be/eXnpxCK1bco
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support

Cannot stomach this pain

P.B.C and antiphospholipid syndrome and for two years I have been experiencing severe pain either soon after eating or three hours later. My gastro consultant put it down to reflux.
P.B.C and antiphospholipid syndrome and for two years I have been experiencing severe pain either soon after eating or three hours later. My gastro consultant put it down to reflux.
Wonderfullife68 profile image
Wonderfullife68
in British Liver Trust

Carrie Ann Inaba "Sjogren's syndrome, lupus, fibromyalgia, rheumatoid arthritis, "and I have the markers for antiphospholipid syndrome' "

https://www.medpagetoday.com/blogs/celebritydiagnosis/92417
https://www.medpagetoday.com/blogs/celebritydiagnosis/92417
Piscesdreamer profile image
Piscesdreamer
in LUPUS UK

Carrie Ann Inaba "Sjogren's syndrome, lupus, fibromyalgia, rheumatoid arthritis, "and I have the markers for antiphospholipid syndrome"

(You may need to sign up for a free patient account, I find their emails to be VERY informative) https://www.medpagetoday.com/blogs/celebritydiagnosis/92417
(You may need to sign up for a free patient account, I find their emails to be VERY informative) https://www.medpagetoday.com/blogs/celebritydiagnosis/92417
Piscesdreamer profile image
Piscesdreamer
in Hughes Syndrome APS Forum

Trying to be hopeful?

Hi all you beauties! I’m needing some love right now. I’m currently 5wks3days. I’ve been having some minor brown discharge that has slowly increased in amount over the past week. Today I went to the bathroom and expecting brown I saw bright red blood. I’ve heard so many people say spotting is normal
Hi all you beauties! I’m needing some love right now. I’m currently 5wks3days. I’ve been having some minor brown discharge that has slowly increased in amount over the past week. Today I went to the bathroom and expecting brown I saw bright red blood. I’ve heard so many people say spotting is normal
Hopingforbaby_ profile image
Hopingforbaby_
in Fertility Network UK

Hip Replacement OP

I've been blessed and offered a cancellation for the hip op. Very last moment, but grabbed it as I've been reduced to a cripple. Had it last Saturday and I'm back home now learning how to walk again and get my knickers on without bending! Just to say the anaesthetist was great. Gave me methadoxatone
I've been blessed and offered a cancellation for the hip op. Very last moment, but grabbed it as I've been reduced to a cripple. Had it last Saturday and I'm back home now learning how to walk again and get my knickers on without bending! Just to say the anaesthetist was great. Gave me methadoxatone
oscarandchloe profile image
oscarandchloe
in PMRGCAuk

Am I entitled to IVF on the NHS

Hi all, after years of tests with my gynaecologist he has finally referred me to an IVF clinic and we had our first appointment today. The Doctor there has said she needs to do some research but she thinks because the Gynaecologist prescribed me Clomiphene that I may now not be entitled to IVF on the
Hi all, after years of tests with my gynaecologist he has finally referred me to an IVF clinic and we had our first appointment today. The Doctor there has said she needs to do some research but she thinks because the Gynaecologist prescribed me Clomiphene that I may now not be entitled to IVF on the
LillyZL profile image
LillyZL
in Fertility Network UK
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