Hi,
I have been diagnosed with APS 8 months ago after a stroke. I am on warfarin and now also on Clopidogrel after having two TIAS.
I am so scared of this disease... Afraid of another stroke or mini stroke, my 8 year old girl get so scared...
Can you live a normal life with this disease?
I live in Copenhagen, Denmark.
Regards Anjdur
Lure2 (one of our lovely Admins is in Sweden so a bit closer than I am and has this for a few years. I was diagnosed nearly 5 years ago and it was a bit hit and miss until I found a good doctor to manage me. As long as you're properly anticoagulated (and this could change until you get the right one) It is a bit scary when you first find out, if you do a few searches on here there is so much information.
Hi, Yes having to live with a new health condition is very daunting. I've had APS for 3yrs now & still have regular anti-coagulation check ups to make sure that my INR levels are correct. I'm on Warfarin. High intake of Vitamin K foods (spinach, berries, broccoli - GOOGLE search for list) affect the INR levels & this can be dangerous. The Warfarin helps to thin the blood so that it doesn't clot, cause blockage of blood flow & form some thrombosis related condition. Warfarin side effects include swelling, bruising, bleeding (report extreme cases to medical pro's immediately). Keep a diary/record of side effects to identify pattern. I'm hoping that once my INR levels are stable, I can take Aspirin instead of Warfarin as less side effects. I think Aspirin is usually given to high risk stroke patients as well, although yours may be more complex.
I live with 9 Lupus related health conditions & each one has been overwhelming. I'm having to get to know my body again & pay closer attention to my mind, body & spirit which once I accepted them, has been very enlightening.
Be kind to yourself! Stay positive! Positive blessings to you x
Thank you and the same to you... I am normally a very positive person, but now I am fragile and scared, not as much for myself but for my family, who have seen me, when I get a stroke - and my little daughter is so scared...
I will try to think positive 😊
By the way, I am allergic to Aspirin.
Take care and thanks for the repli 😊
Hi, I do not think you can take Aspirin instead of Warfarin.
You should never stop anticoagulation when you once have been diagnosed with APS.
Warfarin is an anticoagulation drug which we do need to feel ok again and avoid clots. Aspirin is only an antiplatelet drug and several APS-patients have started with that drug (Baby-Aspirin) but have later on had to be properly anticoagulated with Warfarin.
Best wishes from Kerstin in Stockholm
Hi, I prefer to take a positive outlook to what is possible rather than what is not possible. It's not for us to give medical treatment advice about another persons condition. This should be left to medical pro's & personal choice. Anti- coagulation may not stop but are less frequent in England once INR is more stable. I'm always looking for alternatives to strong pharma meds as I live with 9 health conditions & the long term affects of meds could multiply or worsen those conditions. I'm learning about natural plant medicine as I know there are plants that have amazing healing powers, including thinning blood. The problem is gaining access to the best quality plants available. But I still wouldn't recommend types unless asked or tried by myself.
Positive blessings to you x
Hello Anjdur and welcome to our friendly forum.
Many of our members do live reasonably normal lives and I am one of them.
I run my own Building Surveying practice and I sing in and conduct choirs and I'm also a cyclist, when the rain ever stops here in the UK.
Please make yourself familiar with our charity's website:
Best wishes.
Dave
Thank you, so glad I found you 😊
I think I just need some insurrance, that my life may be quite normal despite the disease...
You will find friends on here. 
Hello Anjdur,
Welcome to this site. I am so glad you found us!
I agree with Dave that we can live a normal life with this illness.
Two things are important: 1.) get properly anticoagulated and also at a steady level.
2. Get an APS-Specialist who knows what to look for regarding symptoms. There are so very few doctors who understand this illness. It can be a fight sometimes to find your doctor. Hope it will be easy for you-
Read also "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the different symptoms and how it is to live with this illness. It is a good book also for relatives to understand.
I hope you stay with us here and that you put your questions here as there are a lot of kind, helpful and knowledgeable members to help you. Feel free to tell us about your problems. We understand (that is the best with this site) better than anyone else.
Best wishes from Kerstin in Stockholm
Thank you so much 😊
I am told that one of my doctors are a specialist in APS, but I haven't met him yet because he is ill... I have seen different doctors, all taken me serious - fx a heart specialist and several tests have been made to rule out a heart disease. A specialist in strokes. And a hematologist and all of them follows me reguarly.
Are now waiting for a sort of school, so that I can messure my inr at home.
My inr are fairly constant now around 3,0 - very difficult to get there, now I hope to keep it there... Hope you understand my english... 😊
My last mini stroke was two weeks ago, and my inr at that day were 2,7 - after that I was put on clopidogrel also...
I mean fragile psysically, but see what you mean 😊
Hi you can live a normal life with this disease, the fear will abate and can be replaced with practical knowledge. Are you under one of our recommended consultants? If you are they will be making sure you have the best outcome. For many as well as the anticoagulation is is also keeping an eye on Vitamin B12, D and iron plus a regular check on your Thyroid, to make sure nothing additional can add to fatigue etc. Please continue to use our forum as much as possible in order to gain confidence from other members, who have been in your position as a newcomer and now help the newbies.. Best wishes. MaryF
I understand your perfect English! The Neurologists, we have found on this site, do not "get" what APS is about - too thick blood that has to be thinned. I selftest since 4 years with an INR of 3.2 - 3.8.
Hope your Specialist will soon recover. Sounds good that you have got such a good help.
Kerstin
Been living with APS since 2004. I look at it as a fact of my life now. Had loving parents to support me emotionally.
One can live a pretty much normal life with APS.
Thank you, needed to hear that 😊
I read you are allergic to Aspirin. Did you go for any tests? I am allergic to aspirin and found out I have an allergy to Salicylates after a lot of research.
Salicylates are chemicals found naturally in plants and are a major ingredient in aspirin and other pain-relieving medications. They are also found in many fruits and vegetables , as well as in many common health and beauty products.
Please check all your medication for Salicylates.
I try and avoid un cooked food because of Salicylates. Try to keep a food diary to check if you are allergic to Salicylates.
I get a rash in my face, if I take pills with Salicylates, but not when I eat fruits etc... Did not know that, thank you 😊
I am 69, my problems started when I was small, I put up with it. Only when I cam to England I went for medication. Jaffa Cakes, I cannot eat, do not know why?
I take medication every day for allergy and have been doing it for the last 35 years. I do not eat any food that react quickly on my lips.
I am on medication for the rest of my life for allergy, as the GP says it is under control
I live in Copenhagen, and I have primary APS.
I am on a waiting list, so that I can selftest - within a month I am told.
Thanks so much for the replie 😊
Hi Anjdur. The people in here are amazing so listen to them. You can at some point live a normal life, when you get a better understanding of your illness and body. I know how it feels to be scarred so you must talk to the people close to you and make them understand how your body is kinda working against you. I live in Odense and read that there is about 200 registered people with aps in Denmark. So you are not alone 😊
Hi Anjdur,
I hope the 'regulars' will excuse my oft repeated comment but as a newly diagnosed you might find it helpful.
I remember how scary it was getting a diagnosis of what was then called Lupus anticoagulant, (now better known as Hughes Syndrome or APS). That I remember how I felt over forty years ago is perhaps confirmation that even our memories may not be as bad as expected. 
Getting the right support is the key to keeping the effect of Hughes upon your life to a minimum.
Best wishes
Tim
Hello! This is truly a scary disease we have. I am post 1.5 yr being diagnosed with APS. Only found because I had s stroke. Was healthy & absolutely no health conditions. I think that is what is so hard to accept that we have this condition with no warning. I take Warfin & Plaqunil. I see a GP, Rhemotogist & a Neurologist. I have been stable since these meds. In fact my # have came down and become stable. I was becoming quite stressed driving because of having fear of an accident. My GP put me on an anxiety drug and I'm doing great!! In time I have found these fears subside with time. Hang in there, it will get better.
Hi Anjdur,
For me it was a relief that I was diagnosed with APS. I wasn't scared. I was only scared and troubled when I didn't have a diagnosis, as life was miserable, and one illness seemed to follow another.
With the diagnosis I could move on, address the problems, get the correct treatment, and yes, lead a normal life. I have three children, a good job, I travel a lot, I keep active, I think I'm now able to lead a normal life in a way that I wasn't before. Sometimes I get a little fatigued, but then so do many people when dealing with modern life.
I'd echo what others have said: an APS specialist is essential, my experience with neurologists has been very bad, and self-testing for warfarin has been a God-send. In fact I haven't seen my haematologist for three years. I test at home, email my INR in, and get a response and dosing within a couple of hours. I can now work and travel anywhere in the world without having to worry about testing.
Thank you, I am so happy to hear that many of us can live a normal life or close to it 😊
I am being followed by a hematologist and a heart doctor (don't know the english word for that 😃) who apparently has a lot of knowledge of APS, but it is still so new for me, so I don't know the doctors so well yet. My hematologist is afraid that my inr gets too high, and the other one is more relaxed...
I am going to be able to selftest within the next month or so...
Many regards Anjdur
My experience of haematologists has been excellent...BUT...they always worry about INR getting too high, perhaps justifiably given that they sometimes see the problems caused by high INR. In contrast, my rheumatologists have a carefree attitude towards INR and don't mind combining warfarin with aspirin, even when my INR is 4.0, much to the concern of my haematologist. At times my INR has accidentally hit 5.5+ which had led to my GP freaking out. For my Rheumatologist it's just been a case of 'miss this evening's dose of warfarin, then continue as normal, and test in three days'.
My feeling is that APS patients are somewhat (though not completely) more protected from bleeds when they have a high INR, compared to a normal patient. This is because our blood is thicker and is generally clotting. Whereas a non-APS heart patient on warfarin is trying to prevent clots, but their blood isn't necessarily thicker. Sadly, I've had friends who don't have APS, who are on warfarin, who have had bleeds on their brain. It would be interesting to know how many APS patients suffer such a bleeding event, even though our INR is higher. I suspect not many.
You'll enjoy self-testing. It really is beneficial. Something to look forward to, not to fear. I'm sure many people on this forum have been on warfarin for much longer than me. However, I've been on it for 7 years now, with zero problems. I suspect if I hadn't been I'd now be dead.
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