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Recommending a specialist
Hi everyone. I think I read somewhere that the Hughes Syndrome Foundation is always looking for specialists to add to their list. I just wanted to share my good experience that I had today with a consultant at Addenbrookes hospital in Cambridge. Dr/Mr Perry is a consultant haematologist who does a specialist
Hi everyone. I think I read somewhere that the Hughes Syndrome Foundation is always looking for specialists to add to their list. I just wanted to share my good experience that I had today with a consultant at Addenbrookes hospital in Cambridge. Dr/Mr Perry is a consultant haematologist who does a specialist
Hopingforababy
in
Hughes Syndrome APS Forum
10 years ago
Is breathlessness a symptom of APS?
I am pregnant and have had one previous pregnancy which ended when i lost my baby at 22 weeks and from the very beginning of each pregnancy (the first 2 weeks) I had extreme shortness of breath on minimal exertion, for example walking a very short distance or getting dressed can have me huffing and puffing
I am pregnant and have had one previous pregnancy which ended when i lost my baby at 22 weeks and from the very beginning of each pregnancy (the first 2 weeks) I had extreme shortness of breath on minimal exertion, for example walking a very short distance or getting dressed can have me huffing and puffing
kateg84
in
Hughes Syndrome APS Forum
10 years ago
pregnant and just diagnosed with aps
Hi everyone, I was just wondering if anyone has had a similar experience to this and a better understanding of it than I have. I had a late miscarriage last year at 22 weeks, I was told that a reason for this would probably never be found but my platelets were a little low and the consultant said she
Hi everyone, I was just wondering if anyone has had a similar experience to this and a better understanding of it than I have. I had a late miscarriage last year at 22 weeks, I was told that a reason for this would probably never be found but my platelets were a little low and the consultant said she
kateg84
in
Hughes Syndrome APS Forum
10 years ago
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Professor Graham Hughes' BLOG February 2014 via London Lupus Centre
February 2014 This time, a real record – the wettest winter ever recorded here in the southern part of Britain! Terrible flood scenes. In this month’s blog I propose to deal (or to start to deal) with ‘treatment’ – still a major issue for all of us – patients and doctors, living with Hughes syndrome
February 2014 This time, a real record – the wettest winter ever recorded here in the southern part of Britain! Terrible flood scenes. In this month’s blog I propose to deal (or to start to deal) with ‘treatment’ – still a major issue for all of us – patients and doctors, living with Hughes syndrome
MaryF
Administrator
in
Hughes Syndrome APS Forum
10 years ago
I am on long term rivaroxyban (for recurrent P Es). I now need to have major surgery. What advice has anyone been given about stopping
and restarting rivaroxyban? I react badly to Warfarin but would be happy to use heparin temporally.
and restarting rivaroxyban? I react badly to Warfarin but would be happy to use heparin temporally.
Wagnerm
in
Anticoagulation Support
10 years ago
The one minute cure. the secret to healing virtually all diseases by Madison Cavanaugh. I have refused any prescribed medication over many
My wife who has lots of allergies Penecillen
Septrin
etc, and is a great beleaver in prescriptions, came home from work last week unable to speak, she had a severe sore throat, and made an immediate visit to the doctor, and was duly given a prescription.
My wife who has lots of allergies Penecillen
Septrin
etc, and is a great beleaver in prescriptions, came home from work last week unable to speak, she had a severe sore throat, and made an immediate visit to the doctor, and was duly given a prescription.
Hidden
in
Cholesterol Support
10 years ago
Oxfordshire based patients
saw an amazing Rheumy at the Nuffield yesterday. Prof Luqmani, can highly recommend him. Been referred to all and sundry and there he was on my doorstep. Starting Plaquenil asap. Already has a plan B if plan A fails including a heparin trial. Couldnt be more thrilled. And I am sero neg APL, sero neg
saw an amazing Rheumy at the Nuffield yesterday. Prof Luqmani, can highly recommend him. Been referred to all and sundry and there he was on my doorstep. Starting Plaquenil asap. Already has a plan B if plan A fails including a heparin trial. Couldnt be more thrilled. And I am sero neg APL, sero neg
loublou
in
LUPUS UK
10 years ago
Pregnancy and cervical stitch
I am nearly 19 weeks pregnant and have been having cervical monitoring due to a lletz treatment in 2012. My cervix is down to 20mm and I need a stitch but I need to stop my blood thinners for two days before they can do it. I am petrified. The doctor tells me that heparin and aspirin will not be totally
I am nearly 19 weeks pregnant and have been having cervical monitoring due to a lletz treatment in 2012. My cervix is down to 20mm and I need a stitch but I need to stop my blood thinners for two days before they can do it. I am petrified. The doctor tells me that heparin and aspirin will not be totally
starships
in
Hughes Syndrome APS Forum
10 years ago
Can't win!!
Well I'm 11 days post total knee replacement, on Monday I saw the GP as my RA was flaring & I felt rough! The Dr gave me some steroids which seems to have helped. Then yesterday I woke up with my ankle & foot swollen, so I "iced" it, put on a toe to groin tubigrip, elevated it, yet carried on exercising
Well I'm 11 days post total knee replacement, on Monday I saw the GP as my RA was flaring & I felt rough! The Dr gave me some steroids which seems to have helped. Then yesterday I woke up with my ankle & foot swollen, so I "iced" it, put on a toe to groin tubigrip, elevated it, yet carried on exercising
Hidden
in
NRAS
10 years ago
Could I have Hughes Syndrome?
I was wondering if I could ask for your thoughts. I had an illness about a year ago where it felt as if my whole body went berserk, and I still don’t understand what happened to me. I had a history of a lupus like illness--photosensitivity, arthralgias, low grade fever, weight loss. After a few years
I was wondering if I could ask for your thoughts. I had an illness about a year ago where it felt as if my whole body went berserk, and I still don’t understand what happened to me. I had a history of a lupus like illness--photosensitivity, arthralgias, low grade fever, weight loss. After a few years
AnnNY
in
Hughes Syndrome APS Forum
10 years ago
Differences between LMWHeparin and Warfarin, how they work, side effects and suitability.
Hi all, I've been looking at the different anticoagulation treatment given for different cases/people, it seems the treatment is usually dependant on whether you have suffered a thrombosis or not. If you have then I believe the common treatment is warfarin however some take Heparin. Is this down to
Hi all, I've been looking at the different anticoagulation treatment given for different cases/people, it seems the treatment is usually dependant on whether you have suffered a thrombosis or not. If you have then I believe the common treatment is warfarin however some take Heparin. Is this down to
jp83
in
Hughes Syndrome APS Forum
10 years ago
Professor Graham Hughes' - February 2014 - Monthly Blog
February 2014 January was the wettest ever recorded in the UK! Large areas of southern England have been under water since Christmas day. Rain, rain, rain. We are making final plans for our annual two day medical conference ‘Ten Topics in Rheumatology’, here in London on Thursday 3rd and Friday 4th
February 2014 January was the wettest ever recorded in the UK! Large areas of southern England have been under water since Christmas day. Rain, rain, rain. We are making final plans for our annual two day medical conference ‘Ten Topics in Rheumatology’, here in London on Thursday 3rd and Friday 4th
MaryF
Administrator
in
Hughes Syndrome APS Forum
10 years ago
After 4 years of good health - with warfarin and having stopped smoking, I am devastated to have suffered a mild TIA this week. Why?
Why do outbreaks occur even when on warfarin? Can stress or anything else cause it, as I believe not. Does anything help alongside meds - I am now back on heparin until my INR levels reach 2.5. So frustrating but lucky to get fab care at RIE. Any advice gratefully received ?
Why do outbreaks occur even when on warfarin? Can stress or anything else cause it, as I believe not. Does anything help alongside meds - I am now back on heparin until my INR levels reach 2.5. So frustrating but lucky to get fab care at RIE. Any advice gratefully received ?
Edinburgh
in
Hughes Syndrome APS Forum
10 years ago
What medication options are there for aggressive APS ?
After eight years of silence from medics post stroke, and MRI for an apparent lupus attack showed extent of my stroke and number of TIAs was urgently placed on a lifetime of warfarin with a heparin bridge while my INR was increased, last November. At the start of January I had my long awaited first appointment
After eight years of silence from medics post stroke, and MRI for an apparent lupus attack showed extent of my stroke and number of TIAs was urgently placed on a lifetime of warfarin with a heparin bridge while my INR was increased, last November. At the start of January I had my long awaited first appointment
Bonnie39
in
Hughes Syndrome APS Forum
11 years ago
Is Aspirin Enough?
Hi there. I was diagnosed in 1999 after recurrent miscarriages. I also have Factor V Leiden and Protein C or S deficiency (can't remember which one :/). I am on 75mg of Asprin daily (which I put myself on!). I have had 1 DVT in my lower leg. I get all the symptoms of Hughes eg. Foggy brain, Fatigue,
Hi there. I was diagnosed in 1999 after recurrent miscarriages. I also have Factor V Leiden and Protein C or S deficiency (can't remember which one :/). I am on 75mg of Asprin daily (which I put myself on!). I have had 1 DVT in my lower leg. I get all the symptoms of Hughes eg. Foggy brain, Fatigue,
Moon_Shadow
in
Hughes Syndrome APS Forum
11 years ago
Professor Hughes December 2013 blog
For us, 2013 ended on a bang – strong winds, heavy rain, widespread flooding. Our small schnauzer, Lucy, has not been keen even to put her toes out of the back door! My apologies for missing two months of blogs. I found that in the UK, the blogs were published on a website called ‘Health Unlocked’
For us, 2013 ended on a bang – strong winds, heavy rain, widespread flooding. Our small schnauzer, Lucy, has not been keen even to put her toes out of the back door! My apologies for missing two months of blogs. I found that in the UK, the blogs were published on a website called ‘Health Unlocked’
Hidden
in
Hughes Syndrome APS Forum
11 years ago
Can you help with a research trial based in London?
The Rivaroxaban in APS (RAPS) trial is now recruting new patients to the trial. Our charity has agreed to help with this important trial as it could finally provide a safe alternative treatment to warfarin. Below is the recruitment paper from Professor Hannah Cohen of University College Hospital in
The Rivaroxaban in APS (RAPS) trial is now recruting new patients to the trial. Our charity has agreed to help with this important trial as it could finally provide a safe alternative treatment to warfarin. Below is the recruitment paper from Professor Hannah Cohen of University College Hospital in
Hidden
in
Hughes Syndrome APS Forum
11 years ago
How long did you take septrin after stopping cyclophosmide?
The pneumonia seems to have cleared up although she still coughs, so her Dr is now suggesting she stops taking
septrin
. This concerns me as its unknown territory for me. How long were you kept on
septrin
after stopping cyclophosmide? Any input Is welcome thanks.
The pneumonia seems to have cleared up although she still coughs, so her Dr is now suggesting she stops taking
septrin
. This concerns me as its unknown territory for me. How long were you kept on
septrin
after stopping cyclophosmide? Any input Is welcome thanks.
luggsey
in
Vasculitis UK
11 years ago
Can't metabolize Coumadin (Warfarin). Anyone else have this same issue?
While on Coumadin at a fairly high INR level I got a huge clot in my abdomen. I was told that I don't metabolize Coumadin (Warfarin). I am now taking an Imitrex injection daily to thin my blood. Problem is my injections were donated to me by the company and I only have about 1 1/2 months left. I
While on Coumadin at a fairly high INR level I got a huge clot in my abdomen. I was told that I don't metabolize Coumadin (Warfarin). I am now taking an Imitrex injection daily to thin my blood. Problem is my injections were donated to me by the company and I only have about 1 1/2 months left. I
Hidden
in
Hughes Syndrome APS Forum
11 years ago
Warfarin vs Heparin/Fragmin 10,000 units
Hi Everyone, Really hoping someone can help. I was started on Fragmin for a trial to see if symptoms improved. They have, I would say around 30 percent but was hoping for more. In the 4 weeks that I have been taking it, I have had 2 pretty bad headaches and that was the one thing I thought would definitely
Hi Everyone, Really hoping someone can help. I was started on Fragmin for a trial to see if symptoms improved. They have, I would say around 30 percent but was hoping for more. In the 4 weeks that I have been taking it, I have had 2 pretty bad headaches and that was the one thing I thought would definitely
EllaRuby
in
Hughes Syndrome APS Forum
11 years ago
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