I have antiphospholipid syndrome. Is this Hughes Syndrome?

[evie47]

Is 75 mg aspirin a day adequate?

[MaryF Administrator]

Hi there and welcome... and yes you have Hughes Syndrome, which is also called antiphospholipid syndrome, APS or sometimes even sticky blood disease. I am on aspirin only.. twice a day, but over time this may change. It depends on your medical history to date. This evaluation of your history is vital. You should also have somebody looking after you who fully understands the full nature of this disease, beyond your GP, normally a haematologist or rheumatologist... or at times a neurologist. You will find by looking around this site and reading various posts and also people's actual profiles what you should or should not be having. Hope this helps. Mary F x

[evie47 in reply to MaryF]

Thanks you for the information. I do not see a haematologist but do see a rheumatologist as I have arthritis and fibromyalgia. I also have V. Leiden. Have had a DVT many years ago and also a PE and possibly TIA. I have also lost 4 babies but in those days they did not look for antiphospholipid. No one has told me of the symptoms of this and no one mentions it either at my GP or my rheumatologist. I did not know about it being called Hughes syndrome or of the symptoms. On reading your website I was so relieved in a way as I have all the symptoms as well, and how! Thanks again for your help, Evie47 x

[cami]

Hi I have aps and sjogren's and take 75mgs aspirin....changes to heperin for any surgery .....but I have never had any clotting issues...like Mary , this may change in the future.

[evie47 in reply to cami]

Thank you for your answer. I am finding that I have a lack of support from the medical professionals

[Sher78]

Yes, u have APS/Hughes/Sticky Blood, whatever u want 2 call it. The treatment they give u deepends on medical history & how severe u're APS is. For example, I am on lifelong warfarin, didn't even go down the Aspirin route.

[evie47 in reply to Sher78]

Thank you for replying to my question. My medical history is quite complicated, but as I have replied to Cami, I do not have any support for this only drugs for my arthritis. All I take is the 75 mg aspirin for the APS

[teadonna]

I have been diagnosed with APS / Hughes syndrome, i was originally on asprin 75 mg then various TIA'S was also put on clopidigrel then because i had 2nd stoke was now put on warfarin original range for INR was 2.5, but then increased to 3.5 which is a better range for me, if it do drop lower i find that the sympt

ons return, only thing is i have to get my INR checked every fortnight at the local hospital as it has to be a full blood test via vein in arm, and not by finger prick which i had when first started on warfarin.,

[greenlady]

hello :-)..i have aps, diagnosed after strokes (which initially they told me was vertigo) and am taking warfarin long term..

i just in the process of finding the way forward as apart from inr i have not seen anyone. am going to see my gp after christmas to ask for a referrl onwards to a specialist..i did take aspirin as well in the beginning, but not now..

[Hidden]

Welcome.....I was so grateful to find this site ...I was diagnosed 3 years ago...fortunately I ended up seeing a Rheumatologist because I had been diagnosed w/ Lyme Disease (far too complicated to explain)...and in New York State the Infectious Disease Society will not "permit" members to use the Latest testing methods....fast forward ..I was recommended to a Rheumatologist who is known to be "Lyme Literate"....in New Jersey...she was able to determine I was negative/Lyme...and tested me for Autoimmune Disorders based on my presenting symptoms....and, voila!....she called me and said "you have tested negative for tick born illnesses by you have sticky blood " ( I had never heard about this)....put me on Aspirin 320mg...4/80mg.... and my symptoms disappeared....she tests my blood every 3 months.....

in the 3 years I developed other symptoms and she did further testing and I have Unspecified Mixed Connective Disorder (my inflammation level was a bit high now normal) and added Plaquenil 2 x daily......I am forever grateful to my MD...she gave me back an active liife

[miamigirl in reply to Hidden]

Hi.

I am curious on your diagnoses. I live in Miami FL and was first diagnosed with APS and in October with Lymes. I haven't been retested for Lymes again yet but APS has been positive 3 times. I went to a haematologist who is known to specialise with APS but he told me I may be false positive for APS due to Lymes. BUT I have read that it can be the other way around.

Curious to know what your GP may have said about it bid you do not mind sharing.

Thanks.

[Hidden in reply to miamigirl]

Hello miamigirl (my 2nd home....I go to Miami Beach 2x a year and stay for a week.....love the warm water....I go from June--October....need 83 degree water......re query.....My Rheumatologist says that a major stressor on our body can bring on an Autoimmune Disorder if we are genetically programmed....I was + for Lyme for a time.....it is a "chicken or the egg" type situation.....I recommend 1. you got to a Rheumatologist who is Autoimmune DIsorder savvy.........and also check out this website ILADS.org

International Lyme and Associated Diseases Society.......or go to Columbia University Lyme Research Center website...............both place have links to

"Lyme literate" MD's ---not many.....and don't bother with an Infectious DIsease MD.....too complicated to explain.....but the above mentioned websites will make YOU "Lyme Disease literate"

Make sure you get the most recent Lyme Tests.....! Infectious Disease MD's are still using a test from 1994......

and if you want to see an interesting Documentary on Lyme

underourskin.com

[grovet29]

I have aps also known as Hughes syndrome . I am 33 and have clotted about 20 times . I've had a stroke on coumadin , a DVT on lovenox , so now I'm on 12.5 mg a day of coumadin and 200 mg a day of lovenox . I get so discouraged sometimes, I feel like my body is trying to kill me , but I'm going to keep fighting . I have four young boys to live for . I spent almost this whole month in the hospital with this last DVT in my leg , behind my knee . I take it one day at a time and ill be fighting this auto amune disorder till the end . Merry Christmas to all and GOD bless . Much love , Tammi G from Tennessee

[grovet29]

Thank u so much ... My four miracle boys loved Christmas, and I loved the look on there faces when they opened there presents . We had a nice day with family . Merry Christmas to all .