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What is likely to happen to me? Please, any advice is needed.
I am really terrified, I am being tested for APS and other things, but only the APS test is going to show anything up, because I had to be given Heparin injections before there was time to take bloods. Please tell me, I have no idea - what is this going to do to my life? This year alone I have been
I am really terrified, I am being tested for APS and other things, but only the APS test is going to show anything up, because I had to be given Heparin injections before there was time to take bloods. Please tell me, I have no idea - what is this going to do to my life? This year alone I have been
anniesensi
in
Hughes Syndrome APS Forum
12 years ago
LIVERPOOL WOMEN'S HOSPITAL 5 STAR TREATMENT
Hello Kim, I am so glad you have had good news at last after your misscarriages and things are looking up for you. I too would like to share my experience with you. I too got pregnant and had a lovely little girl who was 6 weeks premature, she was fine and a good weight of 6lbs. I was quite ill
Hello Kim, I am so glad you have had good news at last after your misscarriages and things are looking up for you. I too would like to share my experience with you. I too got pregnant and had a lovely little girl who was 6 weeks premature, she was fine and a good weight of 6lbs. I was quite ill
Julieanne
in
Hughes Syndrome APS Forum
12 years ago
Bridging therapy when you have a procedure
I don't know about treatment of the elderly in NHS hospitals although I have heard it can be bad. What needs looking at is when you have to come off warfarin to have a test or operation (bridging therapy). My brother, who has an artificial heart valve, had to go in earlier this year and they completely
I don't know about treatment of the elderly in NHS hospitals although I have heard it can be bad. What needs looking at is when you have to come off warfarin to have a test or operation (bridging therapy). My brother, who has an artificial heart valve, had to go in earlier this year and they completely
AFman
in
Anticoagulation Support
12 years ago
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HEPARIN
i AM ON HEPARIN FOR INR BELOW 3. OF LATE BEEN GIVING IT EVERY DAY AND I SEEM TO GET BRUISES ON TUMMY - DOES ANYONE ELSE HAVE THIS. YET WHEN IN HOSPITAL HARDLY A BRUISE ANY TIPS. IAM ALSO ON WARFARIN, STATIN AND PLAQUNIL.
i AM ON HEPARIN FOR INR BELOW 3. OF LATE BEEN GIVING IT EVERY DAY AND I SEEM TO GET BRUISES ON TUMMY - DOES ANYONE ELSE HAVE THIS. YET WHEN IN HOSPITAL HARDLY A BRUISE ANY TIPS. IAM ALSO ON WARFARIN, STATIN AND PLAQUNIL.
daisy11
in
Hughes Syndrome APS Forum
12 years ago
Any suggestions for how to prepare for first appointment with haematologist?
Hi, I've been lurking for a week, and so glad I've found this site. I had one test after my first late miscarriage and they treated me as if I have APS, too late for second baby, but 3rd baby had full APS protocols - even pre-birth and she is now 7! I've had migraines - including visual disturbances
Hi, I've been lurking for a week, and so glad I've found this site. I had one test after my first late miscarriage and they treated me as if I have APS, too late for second baby, but 3rd baby had full APS protocols - even pre-birth and she is now 7! I've had migraines - including visual disturbances
aliceblue
in
Hughes Syndrome APS Forum
12 years ago
Worried Mum and new to site.
My daughter had baby by c section 8 weeks early and with IUGR and low amniotic fluid. (She had a previous ectopic pregnancy about 12 years ago) 4 days later she suffered a splenetic infarct, had an infection and tested positive to lupus anticoagulant. Dr said she had sticky blood. She was in hospital
My daughter had baby by c section 8 weeks early and with IUGR and low amniotic fluid. (She had a previous ectopic pregnancy about 12 years ago) 4 days later she suffered a splenetic infarct, had an infection and tested positive to lupus anticoagulant. Dr said she had sticky blood. She was in hospital
JennyD
in
Hughes Syndrome APS Forum
12 years ago
My journey
Diagnosed with aps after giving birth to my first child 13 weeks early . My son was born 1lb 12 oz. I was diagnosed with toxemia at 20 weeks later developed a placenta blood clot THEY TOOK HIM VIA C-section. I was then sent to a rheumatologist who found a heart murmur I had open heart surgery for a
Diagnosed with aps after giving birth to my first child 13 weeks early . My son was born 1lb 12 oz. I was diagnosed with toxemia at 20 weeks later developed a placenta blood clot THEY TOOK HIM VIA C-section. I was then sent to a rheumatologist who found a heart murmur I had open heart surgery for a
Maizey
in
Hughes Syndrome APS Forum
12 years ago
APS only causes late miscarriages?
Thank you all for your support and advice. I regret I wasn't strong enough to take it. I am outraged at my Hemo but maybe I am just looking for someone to blame. After I found out I was pregnant I was given an early appointment to see a hematologist. I was about 6 or 7 weeks pregnant. I was shocked
Thank you all for your support and advice. I regret I wasn't strong enough to take it. I am outraged at my Hemo but maybe I am just looking for someone to blame. After I found out I was pregnant I was given an early appointment to see a hematologist. I was about 6 or 7 weeks pregnant. I was shocked
SassyOne
in
Hughes Syndrome APS Forum
12 years ago
Could anyone help with my puzzle please? I've been on Septrin Forte 960mg 3 per week, since January 2007 when WG was diagnosed.
The last meeting I had with my Rheum. Consultant suggested I'd be on it for life. My Nephrologist, 2 weeks later suggested it be stopped as he thought it was causing my extreme fatigue but said He'd discuss with my Rheumatologist! He also told me that my red blood cells were very large and he reckoned
The last meeting I had with my Rheum. Consultant suggested I'd be on it for life. My Nephrologist, 2 weeks later suggested it be stopped as he thought it was causing my extreme fatigue but said He'd discuss with my Rheumatologist! He also told me that my red blood cells were very large and he reckoned
braindamage
in
Vasculitis UK
12 years ago
Anyone else have Low Factor VIII Levels???
I has occurred to me that I may be alone with this - so am asking, for it has made my APS quite difficult. Because my Factor VIII Levels are low (which is hemophilia) I was not a candidate for warfarin and heparin did not agree with me either. In other words, I have both the sticky blood of APS and
I has occurred to me that I may be alone with this - so am asking, for it has made my APS quite difficult. Because my Factor VIII Levels are low (which is hemophilia) I was not a candidate for warfarin and heparin did not agree with me either. In other words, I have both the sticky blood of APS and
Leigha
in
Hughes Syndrome APS Forum
12 years ago
My APS experience - hopefully I'm not alone!
Hi, I would like to hear from anyone who may have had a similar experience to mine. (Apologies if this is repeat of what others may have written but I have found it quite therapeutic to write). I am a 36 year old female who began suffering strange symptoms during my first pregnancy 2 years ago (an
Hi, I would like to hear from anyone who may have had a similar experience to mine. (Apologies if this is repeat of what others may have written but I have found it quite therapeutic to write). I am a 36 year old female who began suffering strange symptoms during my first pregnancy 2 years ago (an
APSmum
in
Hughes Syndrome APS Forum
12 years ago
Have met a couple of consultants recently who have a gobsmackingly different opinion of Hughes syndrome!
Was diagnosed with Hughes by Hughes a couple of years ago and have had 4 positive Anticardiolipin tests over time but although I have had plenty of TIA-like events and a 'suspected' DVT and PE, there is no hard evidence of clotting e.g. DVT ultrasound doc was undecided whether it was a clot or not and
Was diagnosed with Hughes by Hughes a couple of years ago and have had 4 positive Anticardiolipin tests over time but although I have had plenty of TIA-like events and a 'suspected' DVT and PE, there is no hard evidence of clotting e.g. DVT ultrasound doc was undecided whether it was a clot or not and
Eagle
in
Hughes Syndrome APS Forum
12 years ago
Maybe the hematologist thinks I'm crazy? Appointment did not go well.
When to the hematologist on Friday. I had to drive 2.5 h to see the nearest hematologist. He said the 3 specialists I went to before were just internists. He told me that the PE I had in my early 20's was provoked and the positive APS tests are coincidental. He did say he was going to repeat the test
When to the hematologist on Friday. I had to drive 2.5 h to see the nearest hematologist. He said the 3 specialists I went to before were just internists. He told me that the PE I had in my early 20's was provoked and the positive APS tests are coincidental. He did say he was going to repeat the test
SassyOne
in
Hughes Syndrome APS Forum
12 years ago
Is there a link between APS & having a baby born with a heart condition?
My daughter was born with tetralogy of fallot ( narrowing of the pulmonary artery). I had her after 5 miscarriages. After she was born & four miscarriages later, I was diagnosed with an elevation of antibodies. With my son I was on heparin & baby aspirin. I am in the process of finding out if this elevation
My daughter was born with tetralogy of fallot ( narrowing of the pulmonary artery). I had her after 5 miscarriages. After she was born & four miscarriages later, I was diagnosed with an elevation of antibodies. With my son I was on heparin & baby aspirin. I am in the process of finding out if this elevation
Nccarolina
in
Hughes Syndrome APS Forum
12 years ago
OMG!!! So freaking frustrating. Does anyone in all of Canada have a clue??? GRRRRRR..
I, like so many others, keep getting told that this is in my head. I was diagnosed in 1996 after multiple miscarriages, but now the hematologist is gone and no one believes I have APS. (Even after using Heparin and aspirin to carry to term; the latest hematologist said it was a 'fluke' and had nothing
I, like so many others, keep getting told that this is in my head. I was diagnosed in 1996 after multiple miscarriages, but now the hematologist is gone and no one believes I have APS. (Even after using Heparin and aspirin to carry to term; the latest hematologist said it was a 'fluke' and had nothing
siveinvan
in
Hughes Syndrome APS Forum
12 years ago
Only in my head?! Really?! OMG so frustrated. Has anyone been to St. Thomas and what are the costs?
I, like so many others, keep getting told that this is in my head. I was diagnosed in 1996 after multiple miscarriages, but now the hematologist is gone and no one believes I have APS. (Even after using Heparin and aspirin to carry to term; the latest hematologist said it was a 'fluke' and had nothing
I, like so many others, keep getting told that this is in my head. I was diagnosed in 1996 after multiple miscarriages, but now the hematologist is gone and no one believes I have APS. (Even after using Heparin and aspirin to carry to term; the latest hematologist said it was a 'fluke' and had nothing
siveinvan
in
Hughes Syndrome APS Forum
12 years ago
Looking for successful pregnancy stories! after APS diagnosis
Hello All! I have had recurrent early miscarriages and was diagnosed with APS after my wonderful gynaecologist agreed to 'investigate me' I am now 27 weeks pregnant, I am taking aspirin and heparin daily and the baby is doing well. I have been advised to give up my part time job and REST! My gynaecologist
Hello All! I have had recurrent early miscarriages and was diagnosed with APS after my wonderful gynaecologist agreed to 'investigate me' I am now 27 weeks pregnant, I am taking aspirin and heparin daily and the baby is doing well. I have been advised to give up my part time job and REST! My gynaecologist
hpwellsy
in
Hughes Syndrome APS Forum
12 years ago
Do APS sufferers bruise easily?
I was diagnosed with APS two years ago after three miscarriages. I went onto Heparin whilst pregnant with my second son and had a brilliant pregnancy. I still feel rather uninformed about APS and have turned into a hypercrondriac wondering whether every ache in my leg is a clot etc. I do bruise easily
I was diagnosed with APS two years ago after three miscarriages. I went onto Heparin whilst pregnant with my second son and had a brilliant pregnancy. I still feel rather uninformed about APS and have turned into a hypercrondriac wondering whether every ache in my leg is a clot etc. I do bruise easily
Sathawes
in
Hughes Syndrome APS Forum
12 years ago
Prof Graham Hughes' April blog
A wet bank holiday. An ‘indoors’ day. Shopping? No. Go to watch Charlton Athletic (my wife’s favourite team)? Neither of us keen to get wet and cold. So, an April blog. An interesting paper was published recently in the journal Rheumatology. In a collaborative study from eight centres in Italy
A wet bank holiday. An ‘indoors’ day. Shopping? No. Go to watch Charlton Athletic (my wife’s favourite team)? Neither of us keen to get wet and cold. So, an April blog. An interesting paper was published recently in the journal Rheumatology. In a collaborative study from eight centres in Italy
Hidden
in
Hughes Syndrome APS Forum
12 years ago
My diagnosis
Hi all, I am new to the site and this is the second time I have tried to post this so fingers crossed it works this time! I suffered a DVT back in 1998 when my two boys were 1 1/2 and 3 1/2 respectively so a surprise to everyone that with all that running around and as a non-smoker I'd be a candidate
Hi all, I am new to the site and this is the second time I have tried to post this so fingers crossed it works this time! I suffered a DVT back in 1998 when my two boys were 1 1/2 and 3 1/2 respectively so a surprise to everyone that with all that running around and as a non-smoker I'd be a candidate
Hidden
in
Hughes Syndrome APS Forum
12 years ago
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