hughes syndrome/ blood clotting issues/ pulmonary emboli??

Question

my wife has just been diagnosed with hughes syndrome, the doc isnt being very informative, anyone know anything about it.

Answer 1

Crazy man gets a thumbs up for a good answer. I too am 25, and have Antiphospholipid Antibody Syndrme, also known as Hughes Syndrome.

I suffered a massive Pulmonary Emboli in 2004 at the age of 22. Three months later I suffered a second episode.

Suggest to your wife that she keeps a symptom journal. She will need to be attentive to her body and her symptoms.

Know too, that APS doesn't just cause clots. It also causes fatigue, arthritic symptoms, vertigo, memory loss, mental confusion, low platelet count, and many other symptoms.

My APS eventually got so severe that I had to quit my job. I still have to work of forgiving my body for being sick. I am so tired anymore, that I can't do the things I did even a few years ago. I had to accept my "new normal". Your wife will have to accept her "new normal" too.

She really should wear a Medic Alert bracelet especially if she is taking blood thinners. If she is in an accident, not only could she bleed excessively, she could also clot. I strongly suggest www.medicalert.org to purchase a bracelet. They are big enough for medics to see, and they are pretty. Best of all, they give 24 hour on-call protection.

She needs to watch her activities, and should not do anything that could put her at risk for bruising or bleeding.

It is a very frightening disease, and your wife not only needs to be informed, but she will also need a close support system. Many APS patients see a psychologist or clergy member to talk to. It can be a progressive disease. It is for me, at least. When I got the PE back in 2004, I was put on 5mg daily of Coumadin, a blood thinner. Today, I'm at a whopping 10.5mg. Even on this high dose, I still managed to get a clot in my arm last spring.

Follow Crazy man's suggestions. Be assertive with your doctor, or consider getting a new one. She really sould have a specialist such as a hemotologist or rheumatologist, as these two are both well learned in this disease.

Avoid over consumption of leafy greens. They have a high content of vitiman K, which naturally clots blood. Urge her doctor to have her put on Coumadin, most especially if she has suffered a PE. A good theraputic range for patients with APS is 2.5-3.5, or sometimes even higher.

It is also interesting to note that Coumadin, although it is a blood thinner, does not protect against arterial clots (such as those that lead to the brain). In addition to Coumadin, I take one baby asprin every day.

Also, you REALLY need to talk to your doctor about pregnancy, if you plan on having a baby. Both her life and the baby's will have to be under strict supervision by a high risk OB. Taking Coumadin during pregnancy can cause massive defects in the baby. She would have to take Lovenox shots every day. Also, the Pill can also increase the risk of clots. Look into Natural Family Planning, or NFP for safe and natural birth control.

One last note, I have found a really teriffic support group online at www.apsfa.org It is run by a lady that suffers from APS herself. There are hundreds of members, and about 900 articles pertaining to the disease.

Be a big support to her, as I'm sure you are. It can be a very frightening time for you both.

Below I have some articles that you might be interested in. Good luck to you, and please know that I will keep you and your wife especially in my prayers. God Bless,
Chris

Oh, Please feel free to email me if you have any more questions or concerns!

Answer 2

I'm 25 turning 26 soon and was diagnosed with hughes syndrome (also known as anti phospholipid syndrome or APLS) about 6 years ago.
I'm on wararin for life which is a blood thining medication. I have weekly or fortnightly INR's (international normalised ratio) blood tests. Normal people's INR's should be 1.0 where as APLS people should keep theirs between 2.0 and 3.0. The doctor should be monitoring her INR's very closley. If it goes too low she's at risk of having a fatal clot to her heart, brain or lungs and if it goes too high she's at risk of having massive internal bleeding anywhere in her body.
Some of the problems that I've found is reactions to the warfarin. Ones that I've been told that I have to cope with cause this is a drug that is going to keep me alive for the next 60-70 years. I have an intolerance to the cold weather. In winter I have many layers of clothes on and the heater going as well as being wrapped in the doona and I still feel cold. I usually shower 3-4 times a day to "re-heat". Another thing is if i'm out in the sun to long I got these non painfull blisters. This I've been told is the warfarin in my blood reacting to the sun and my blood "boiling". My specialists told me this. I have had a few problems with my kidneys as well and I drink cranberry juice to avoid infections in them.
One of the most important things is to tell the doctor about any change to your lifestyle as well. Green vegetables and legumes are high in vitamin K and this reverses the warfarin. Her doctor will adjust her warfain in accordance to what she is doing in her life. If she wants to eat these foods she should eat them in the same amounts every single week.
One more thing is she should never take anti-inflammatory medicine or Ibuprofen or asprin. These medications thin your blood and cause enormous problems.
If you have any other questions, feel free to email me.

Answer 3

Hughes Syndrome or APLA Syndrome is a problem with the antibodies in the blood which cause coagulation issues. The best treatment currently is plain old aspirin. Aspirin prohibits the platelet activation in the blood.

Not sure why her physician is being so clandestant unless your wife requested so. Im a pediatric neurologist, so I'd be happy to answer any questions I can for you. Feel free to contact me.

Answer 4

the time they take to break down and dissolve depends on each particular case but it usually take a little more than six months