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Hughes Syndrome APS Forum

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Atrial Fibrillation

I was diagnosed with A-Flutter 3 years ago by an Electrophysiologist that came to work for the Cardiology department of the Cardiologist I have been seeing for...

I was diagnosed with A-Flutter 3 years ago by an Electrophysiologist that came t...

Lizilue

•2 months ago

4 Replies

Triple Positive, High Titres, no event yet. Prevention?

Hi all - On the one hand, I feel very fortunate to know that I have the APL antibodies (just tested as persistent at 12 weeks) before anything dire has...

Hi all - On the one hand, I feel very fortunate to know that I have the APL ant...

queen-adjacent

•4 months ago

14 Replies

The Mind Body Connection with APS and any autoimmune disease

Hi again, I’m an Osteopath, Naturopath, Medical Acupuncturist etc and it took 20 years for me to get an APS diagnosis. I was initially diagnosed as having...

Hi again, I’m an Osteopath, Naturopath, Medical Acupuncturist etc and it took 20...

Madmumma

•1 year ago

5 Replies

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shockwave therapy

hi, has anyone who is triply positive for APS been given the OK for shockwave therapy. I’ve got non-traumatic fractures that haven’t healed after almost 5...

hi, has anyone who is triply positive for APS been given the OK for shockwave th...

Madmumma

•1 year ago

5 Replies

negative aps long term treatment

I was diagnosed 1999 with APS locally then confirmed at St Thomas’ by Hunt. After my brain scan revealed multiple infarcts I was put on blood thinners for...

I was diagnosed 1999 with APS locally then confirmed at St Thomas’ by Hunt. Afte...

Jensgoldenpig

•2 years ago

14 Replies

NHS covid treatment advice

I recently received a letter in the form of an email from the NHS stating that following a review of my medical records, i should immediately report to them if...

I recently received a letter in the form of an email from the NHS stating that f...

Yodel

•2 years ago

13 Replies

I have got to prove that I am having an INR test and my INR numbers ....to get a Warfarin prescription?! Anyone else been asked for proof?!

I went to my GP today... While putting in my repeat prescription for warfarin the lovely receptionist says that she would be unable to fill prescription until...

I went to my GP today... While putting in my repeat prescription for warfarin th...

loppylou68

•9 years ago

68 Replies

Who gets monitored by a blood test every 6-8 weeks when they are on hydrochloquine..?.

My Gp just said I should of been monitored by blood tests every 6-8 week's since o stared on hydrochloquine needless to say that's not been happening...... My...

My Gp just said I should of been monitored by blood tests every 6-8 week's since...

loppylou68

•9 years ago

12 Replies

Double blind study for people with low hb....if your having abdominal surgery....?! Anyone?!

I have just been called regarding taking part in a double blind study for people with low hb...who are having abdominal surgery.... Apparently me having an...

I have just been called regarding taking part in a double blind study for people...

loppylou68

•9 years ago

6 Replies

Ablation didn't solve problem so I've been told I am to have full hysterectomy..... :(

Unfortunately the ablation has not had the desired affect so at my last visit with the gyne / surgeon he has said I will be having a full hysterectomy...

Unfortunately the ablation has not had the desired affect so at my last visit wi...

loppylou68

•9 years ago

7 Replies

Update from surgery

Hi all!! As promised, here is an update after my surgery. The procedure went very well, the doctor placed rods and screws in my back...very little blood loss...

Hi all!! As promised, here is an update after my surgery. The procedure went ve...

becca10

•9 years ago

19 Replies

Mixed Connective Tissue Disease

Hi there, I was diagnosed with APS & Sjogrens back in 2008, although at the time the Specialist said he thought I had Mixed Connective T.D., no bloods or...

Hi there, I was diagnosed with APS & Sjogrens back in 2008, although at the tim...

Zamalek

•9 years ago

2 Replies

Upcoming surgery

Hey all, I've been laying low and trying to deal with some on going health issues like everyone else on here. I am now facing yet another pretty serious...

Hey all, I've been laying low and trying to deal with some on going health issue...

becca10

•9 years ago

21 Replies

Xarelto

Hi from Norway 😀. This is my first post here. I got APS and PE in both lungs this summer and have been using Xarelto since that happened. The last Month thow,...

Hi from Norway 😀. This is my first post here. I got APS and PE in both lungs th...

Jonr

•9 years ago

35 Replies

Frankincense Oil

Hi all, I am having a very tough time at the moment. I've had a constant migraine since around April 2015. I'm awaiting a lumbar puncture to check pressures...

Hi all, I am having a very tough time at the moment. I've had a constant migrain...

Louise_Davies

•9 years ago

6 Replies

Problem with hospital I am admitted to does not hold Zantiva (plaquenil) hydroxychloroquine

I was admitted to hospital out of home area and now the hospital refuses to give me the above named hydroxychloroquine and refuses to give me from a Nursing...

I was admitted to hospital out of home area and now the hospital refuses to give...

Peecue

•9 years ago

15 Replies

Eliquis or Xarelto

There is an antidote to these drugs being approved here in the states in 2016. I opted to not take wither of these because of no antidote being available. My...

There is an antidote to these drugs being approved here in the states in 2016. I...

mylafont

•9 years ago

14 Replies

Finding doctors who know how to help

Hi all. My APS has become very symptomatic in the past couple of years. Three years ago, my blood disorder played a fairly insignificant role in my life....

Hi all. My APS has become very symptomatic in the past couple of years. Three ...

smartboredgirL

•9 years ago

21 Replies

good evening all

no longer seeing any doctors for my aps., dizziness. no one is willing to try anything to stop or slow it, so i see no reason to see them anymore. it is...

no longer seeing any doctors for my aps., dizziness. no one is willing to try an...

packerfan

•9 years ago

12 Replies

nerve conduction study says no peripheral neuropathy?!

Hello nice people! I'm in the UK.... I have quite a complex health history which at the moment is confusing even the professionals so any extra help or past...

Hello nice people! I'm in the UK.... I have quite a complex health history which...

Hidden

•9 years ago

3 Replies

Hopeful referral to APS specialist

Hi all, thank you for your help and answers about referral to an APS specialist. After a long route of being sent from doctor to anticoagulant clinic to self...

Hi all, thank you for your help and answers about referral to an APS specialist....

Vespa1

•9 years ago

8 Replies

brain aneurysm surgery and warfarin

My brain aneurysm saga: As in my prior posts, I was diagnosed with a 3mm brain aneurysm in Sept. and was scheduled for a 'cerebral artery angiogram' for Nov....

My brain aneurysm saga: As in my prior posts, I was diagnosed with a 3mm brain ...

mozelle

•9 years ago

23 Replies

Interesting article

http://emjreviews.com/wp-content/uploads/Antiphospholipid-Syndrome-Novel-Therapies.pdf

http://emjreviews.com/wp-content/uploads/Antiphospholipid-Syndrome-Novel-Therapi...

Fusch

•9 years ago

3 Replies

IVF & when to take blood thinners

Hi there, So after 2 miscarriages in 2013 / 2014, I was diagnosed with APS. I went on aspirin and heparin for my next pregnancy that happened very quickly...

Hi there, So after 2 miscarriages in 2013 / 2014, I was diagnosed with APS. I we...

Tlove

•9 years ago

10 Replies

Air travel

Following my hubby's 3rd stroke 2 weeks after returning from a short hall flight we have been very reluctant to book another holiday abroad, (This was May 2014...

Following my hubby's 3rd stroke 2 weeks after returning from a short hall flight...

Vespa1

•9 years ago

12 Replies

Rheumatoid and Hughes

Hi to all. My mum has had Hughes syndrome from birth coupled by rheumatoid arthritis from 20 years ago. She is due to have surgery in a couple of months for...

Hi to all. My mum has had Hughes syndrome from birth coupled by rheumatoid arth...

mariadaniella94

•9 years ago

10 Replies

Partial deafness and hearing aids.

Hi guys, I have been diagnosed partial deafness and my audiologist in Westside audiology suggested me to use digital hearing aids. Does anybody have...

Hi guys, I have been diagnosed partial deafness and my audiologist in Westside ...

keithfcoleman

•9 years ago

4 Replies

So frustrated by hospital appointment

Hi all, So today was my long awaited appointment with Dr Karim (as recommended from the list on here). I wasn't sure what to expect and, as a result, probably...

Hi all, So today was my long awaited appointment with Dr Karim (as recommended ...

phoenix77

•9 years ago

18 Replies

I've been experiencing Allergies on my skin twice a week.

Hello I need help. I've been experiencing skin itchiness. It's been 4 months now. It comes every week, twice a week specifically. It is like a bite of a...

Hello I need help. I've been experiencing skin itchiness. It's been 4 months now...

nixespina

•9 years ago

7 Replies

Remedies for Headaches?

Hi, I'm 17 years old. I've been having headaches since I was 12 years old. As I get older they get worse. For the past 6 months the left side of my head and...

Hi, I'm 17 years old. I've been having headaches since I was 12 years old. As I ...

Hidden

•9 years ago

4 Replies

Write a post or ask a question

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

Treatment posts

Atrial Fibrillation

Triple Positive, High Titres, no event yet. Prevention?

The Mind Body Connection with APS and any autoimmune disease

shockwave therapy

negative aps long term treatment

NHS covid treatment advice

I have got to prove that I am having an INR test and my INR numbers ....to get a Warfarin prescription?! Anyone else been asked for proof?!

Who gets monitored by a blood test every 6-8 weeks when they are on hydrochloquine..?.

Double blind study for people with low hb....if your having abdominal surgery....?! Anyone?!

Ablation didn't solve problem so I've been told I am to have full hysterectomy..... :(

Update from surgery

Mixed Connective Tissue Disease

Upcoming surgery

Xarelto

Frankincense Oil

Problem with hospital I am admitted to does not hold Zantiva (plaquenil) hydroxychloroquine

Eliquis or Xarelto

Finding doctors who know how to help

good evening all

nerve conduction study says no peripheral neuropathy?!

Hopeful referral to APS specialist

brain aneurysm surgery and warfarin

Interesting article

IVF & when to take blood thinners

Air travel

Rheumatoid and Hughes

Partial deafness and hearing aids.

So frustrated by hospital appointment

I've been experiencing Allergies on my skin twice a week.

Remedies for Headaches?

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