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Hello.. it's been a while.
I haven't been on this site in a couple of months, probably since around my miscarriage back in July. As most of you who have followed my posts, know the struggle my partner and myself have had this year. Losing our baby boy at 21 weeks in March and going on to have a miscarriage in July. These last
I haven't been on this site in a couple of months, probably since around my miscarriage back in July. As most of you who have followed my posts, know the struggle my partner and myself have had this year. Losing our baby boy at 21 weeks in March and going on to have a miscarriage in July. These last
kirstyleigh
in
Hughes Syndrome APS Forum
10 years ago
Sticky blood and depression/lethargy
I arrived at this community by a rather long route. Back in July 2014 I was diagnosed with a DVT. A big one - four inches long behind the knee. Many years ago I'd had a DVT and a PE, but came off Warfarin after a few years. Clearly, now, I need to stay on the Warfarin. My first DVT was different. I
I arrived at this community by a rather long route. Back in July 2014 I was diagnosed with a DVT. A big one - four inches long behind the knee. Many years ago I'd had a DVT and a PE, but came off Warfarin after a few years. Clearly, now, I need to stay on the Warfarin. My first DVT was different. I
MeerB
in
Hughes Syndrome APS Forum
10 years ago
APS after 3 miscarriages and a still birth AND a premature baby?!!
Hi all, I don't know how this works but I thought I will give it a go. I was recently diagnosed with APS after I had 3 miscarriages and still birth but they only decided to test me after I had still birth and 3 miscarriages which I had to fight my GP who thought it was all in my head and I was absolutely
Hi all, I don't know how this works but I thought I will give it a go. I was recently diagnosed with APS after I had 3 miscarriages and still birth but they only decided to test me after I had still birth and 3 miscarriages which I had to fight my GP who thought it was all in my head and I was absolutely
Nafisah
in
Hughes Syndrome APS Forum
10 years ago
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Professor Graham Hughes August 2014 Blog
Professor Graham Hughes August 2014 Blog The medical journal LUPUS, which publishes many of the research papers and conference reports on Hughes syndrome, runs a regular series called ‘Lupus around the World’. More than anything else, this series has highlighted the variation in lupus prevalence from
Professor Graham Hughes August 2014 Blog The medical journal LUPUS, which publishes many of the research papers and conference reports on Hughes syndrome, runs a regular series called ‘Lupus around the World’. More than anything else, this series has highlighted the variation in lupus prevalence from
MaryF
Administrator
in
Hughes Syndrome APS Forum
10 years ago
Surgery update..
Good morning everyone, I am back home from surgery last week. They removed the mass's that were attached to my ovary. They took the mass's in one complete piece in case there was cancer inside of the ovary, they did exploratory internally after the removal and there was nothing negative to report. Praise
Good morning everyone, I am back home from surgery last week. They removed the mass's that were attached to my ovary. They took the mass's in one complete piece in case there was cancer inside of the ovary, they did exploratory internally after the removal and there was nothing negative to report. Praise
beccafullcircle
in
Hughes Syndrome APS Forum
10 years ago
heparin dosage in pregnancy
Hi again. I need your advice and experience with APS and pregnancy treatment. In 6 week of my pregnancy i got positive lupus anticoagulant test and also in 11 week of pregnancy. Since 8 week i am on aspirin 100 and clexane 40mg. Last week I got negative LAc test and my doctot want to take clexane 20
Hi again. I need your advice and experience with APS and pregnancy treatment. In 6 week of my pregnancy i got positive lupus anticoagulant test and also in 11 week of pregnancy. Since 8 week i am on aspirin 100 and clexane 40mg. Last week I got negative LAc test and my doctot want to take clexane 20
Glassart
in
Hughes Syndrome APS Forum
10 years ago
Insomnia and muscle spasms - off to st t's x
Hi all - im finally off to st thomas' today,and to start my plaquenil - so wish me luck!!! With all your advice on here im going to take notes and ask for heparin. Ive had two hours sleep with my muscles in spasm and insomnia so i can only assume my inr is low, with the kidney problesm lately i just
Hi all - im finally off to st thomas' today,and to start my plaquenil - so wish me luck!!! With all your advice on here im going to take notes and ask for heparin. Ive had two hours sleep with my muscles in spasm and insomnia so i can only assume my inr is low, with the kidney problesm lately i just
emmaj
in
Hughes Syndrome APS Forum
10 years ago
Advice after miscarriages
Hi all, I am so happy to find this forum. I was (cautiously) diagnosed with APS after 2 miscarriages and no children yet. I say cautiously because I have yet to have the follow up test but my anti-cardiolipin antibodies were quite high and the consultant in the pregnancy loss clinic was pretty confident
Hi all, I am so happy to find this forum. I was (cautiously) diagnosed with APS after 2 miscarriages and no children yet. I say cautiously because I have yet to have the follow up test but my anti-cardiolipin antibodies were quite high and the consultant in the pregnancy loss clinic was pretty confident
Tlove
in
Hughes Syndrome APS Forum
10 years ago
Re. Heparin trial
Sorry I didn't get to answer your posts until now, thank u for all your replies,I've been driving 120mile roundtrip to see my mother in hospital and get very tired. I'll explain myself properly this time. I have cerebral vasculitis lupus+aps. And I've been getting a lot of headaches +nausea +sore skin
Sorry I didn't get to answer your posts until now, thank u for all your replies,I've been driving 120mile roundtrip to see my mother in hospital and get very tired. I'll explain myself properly this time. I have cerebral vasculitis lupus+aps. And I've been getting a lot of headaches +nausea +sore skin
Elfie1
in
Hughes Syndrome APS Forum
10 years ago
Heparin trial
Hi everybody, bee to see my rheumatologist, acl.Antibodies running very high so the prof. Wants me in hospital within the next week. He is stopping the aspirin and starting heparin and cyclophosphamide. I'm a bit scared, has anyone else been on this? Grateful for your reply Thanks Elfie.
Hi everybody, bee to see my rheumatologist, acl.Antibodies running very high so the prof. Wants me in hospital within the next week. He is stopping the aspirin and starting heparin and cyclophosphamide. I'm a bit scared, has anyone else been on this? Grateful for your reply Thanks Elfie.
Elfie1
in
Hughes Syndrome APS Forum
10 years ago
Headaches while asleep
Hi All Does anyone else get headaches just when they are asleep? You may ask how do I know if I am asleep - I have to get up to go to the loo, so half awake and headache always present then, but not during the day. Get blurred vision and floating grey bits in front of my eyes in the day, but not headaches
Hi All Does anyone else get headaches just when they are asleep? You may ask how do I know if I am asleep - I have to get up to go to the loo, so half awake and headache always present then, but not during the day. Get blurred vision and floating grey bits in front of my eyes in the day, but not headaches
Elaine77c
in
Hughes Syndrome APS Forum
10 years ago
Question about treatment
I was blessed 3 weeks ago with a healthy baby girl after years of heartache due to undiagnosed Hughes. I was on aspirin and heparin in pregnancy. I've seen a consultant haemotologist who says all my tests were negative apart from the DRVVT - the more sensitive one for lupus antibody. He says that as
I was blessed 3 weeks ago with a healthy baby girl after years of heartache due to undiagnosed Hughes. I was on aspirin and heparin in pregnancy. I've seen a consultant haemotologist who says all my tests were negative apart from the DRVVT - the more sensitive one for lupus antibody. He says that as
Hopingforababy
in
Hughes Syndrome APS Forum
10 years ago
Professor Hughes June Blog 2014, included as much content about the link with Thyroid problems!
Written for Hughes Syndrome Foundation charity and the patient forum: TUK attended the HSF Patient Day at St Thomas's and I and my co administrator will be coming to TUK's in October due to the crossover with disease! Professor Graham Hughes June 2014 Blog I have just received a copy of our latest
Written for Hughes Syndrome Foundation charity and the patient forum: TUK attended the HSF Patient Day at St Thomas's and I and my co administrator will be coming to TUK's in October due to the crossover with disease! Professor Graham Hughes June 2014 Blog I have just received a copy of our latest
MaryF
in
Thyroid UK
10 years ago
Professor Graham Hughes June 2014 Blog
I have just received a copy of our latest book, Sjögren’s Syndrome in Clinical Practice. Produced with colleagues Dr Shirish Sangle and Dr Simon Bowman, it is published by Springer (ISBN 978-3-319-06058-3). I hope it will prove helpful both to patients as well as to doctors. One of the aims of the
I have just received a copy of our latest book, Sjögren’s Syndrome in Clinical Practice. Produced with colleagues Dr Shirish Sangle and Dr Simon Bowman, it is published by Springer (ISBN 978-3-319-06058-3). I hope it will prove helpful both to patients as well as to doctors. One of the aims of the
MaryF
Administrator
in
Hughes Syndrome APS Forum
10 years ago
Protein s deficiency
Hi Was diagnosed with DVT and been on Heparin (now off) and Warfarin for nearly two months out of a three month treatment time. There was no obvious reason for the DVT and all the main factors were ruled out and I'm an active 36 yr old. My GP sent me for a lot of blood tests and I believe they took about
Hi Was diagnosed with DVT and been on Heparin (now off) and Warfarin for nearly two months out of a three month treatment time. There was no obvious reason for the DVT and all the main factors were ruled out and I'm an active 36 yr old. My GP sent me for a lot of blood tests and I believe they took about
Richyb78
in
Anticoagulation Support
10 years ago
Complicated
This is a weird one. I have had 4 DVTS's in the past. This one being my 4th. Actually it should still be my 3rd but I will explain. My mother who I have no contact with has had them all the time. So has my uncle her brother. I got my 1sr one when in 2004. I was around 20 or had just turned 20 maybe the
This is a weird one. I have had 4 DVTS's in the past. This one being my 4th. Actually it should still be my 3rd but I will explain. My mother who I have no contact with has had them all the time. So has my uncle her brother. I got my 1sr one when in 2004. I was around 20 or had just turned 20 maybe the
samthompson17
in
Anticoagulation Support
10 years ago
Our baby girl is here!
After a failed induction our baby girl was born today by C section weighing 6 lbs 8 oz at 38 weeks. Our miracle after twin slillbirth and 2 miscarriages. Here is a pick. Proof it is possible with good antenatal care and heparin and aspirin!
After a failed induction our baby girl was born today by C section weighing 6 lbs 8 oz at 38 weeks. Our miracle after twin slillbirth and 2 miscarriages. Here is a pick. Proof it is possible with good antenatal care and heparin and aspirin!
Hopingforababy
in
Hughes Syndrome APS Forum
10 years ago
Scary times
Hi everyone New to all this and it's quite scary. I'm 61 and have recently be diagnosed with multiple bilateral pulmonary embolisms and left sided pneumonia. Had Heparin and now on Warfarin. INR is not stable but then who's is? ... This forum's a great idea and you've all educated and calmed my ignorance
Hi everyone New to all this and it's quite scary. I'm 61 and have recently be diagnosed with multiple bilateral pulmonary embolisms and left sided pneumonia. Had Heparin and now on Warfarin. INR is not stable but then who's is? ... This forum's a great idea and you've all educated and calmed my ignorance
Tadmad
in
Anticoagulation Support
10 years ago
Heparin trial
Hi all, I'm due to see my rheumatologist soon, would it it be acceptable to ask about a heparin trial because I feel the 300mg. Of aspirin daily is not doing the job anymore, I seem to be getting a lot of headaches/ migraines again. I had a letter after the last bloods were taken 6months ago to say I
Hi all, I'm due to see my rheumatologist soon, would it it be acceptable to ask about a heparin trial because I feel the 300mg. Of aspirin daily is not doing the job anymore, I seem to be getting a lot of headaches/ migraines again. I had a letter after the last bloods were taken 6months ago to say I
Elfie1
in
Hughes Syndrome APS Forum
10 years ago
Anyone have any advice? I am pregnant. (I have Hughes syndrome & Lupus).
If I have worked it out correctly, I am around 5weeks pregnant. I have started taking the heparin injections daily and 150mg aspirin daily. I had my follow up appointment with my consultant, who seems to be very happy for me and my partner. But after losing my little man at 21 weeks, I can't help but
If I have worked it out correctly, I am around 5weeks pregnant. I have started taking the heparin injections daily and 150mg aspirin daily. I had my follow up appointment with my consultant, who seems to be very happy for me and my partner. But after losing my little man at 21 weeks, I can't help but
kirstyleigh
in
LUPUS UK
10 years ago
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