Sticky Blood-Hughes Syndrome Support


Happy New Year here you all! In the end of last year APS specialist visited our hospital. I didn't see him, but he looked my case and I got letter about it. He only confirmed the medication, Warfarin and Aspirin both continued. Warfarin with INR 2-3 target. Cardiolipin antibodies were little lower, maybe Hydroxyclorin reduses it??

Who of you has both Warfarin and Aspirin and why both? I know this is always doctors decision, but I am curious..

15 Replies


I used to be on both Warfarin & Aspirin and now on Fragmin & Aspirin. They work in different ways on different parts of the clotting cascade, so some people do benefit from taking both.

A target INR of 2-3 is quite low for most APS patients though.



Hi Leenalina,

Good to hear from you! Happy New Year to you also!

I do not think that it is very common with both Aspirin and Warfarin. You also use Hydrocloroquine. I have learned that it is the same as Plaquenil.

I tried a low dose of Aspirin at first. That helped but later on it did not help. They tried the double dose with no change in symptoms. I had to have warfarin to be helped from my symptoms.

Do you also have Lupus?

An INR of 2 - 3 is very low. First I had 2.5 - 3.5 but I do not feel well at all if I am under 3.0.

Now I have 3.0 - 3.5 in INR and I selftest every second day since a couple of years. So I am not under 3.0 because then I get my symptoms back. I try to be at 3.5. It can be difficult if you change the drugs or have antibiotica for ex.

I have positive antibodies af all the sorts there are for this illness and in high titres since 2002. Personally I do not think the antibodies are so important in how you feel.

Good Luck to you and take care!

Kerstin in Stockholm


Thank you Dave and Kerstin! First I was only on Aspirin, but it didn't relieve my symptoms. I told this to doctor and he put me on blood test which shows if Aspirin works for me. And it did. I wonder why it didn't relieve the symptoms...

Now with Warfarin, I feel better. Kerstin, I don't have lupus, but I have some symptoms of it. First I was diagnosed with undifferentiated connective tissue disease with ana positive. But in latest medical case summary there was written only APS.


One of the medical journal articles I read which was reviewing research and treatment options for APS suggested that if you prescribed anticoagulation and antiplatelet medication together you could aim for a lower INR - perhaps he is following that regime? If you feel better that's great. When I first started Warfarin I was also on Plavix (think that was what it was called but whatever it is also known as 'posh aspirin' as it does the same job but costs more) - I always felt it was like a safety net as even if INR low it was also thinning my blood - it also dealt with headaches that Warfarin didn't. When my INR got to over 3 they made me give it up.


Elaine, do you feel better or worse now with higer INR and without Plavix? I know these are individual how we response to different medication, but it is interesting to know how other people feel. I think alsoPlavix (clopidogrel) is equivalent to Aspirin, my mother has got it.


I am ANA pos for Lupus (although the Doctors are somewhat confused because the problems I have are mostly symptoms of mixed connective tissue disease), lupus anticoagulant and a problem with anti-phospholipid syndrome. Auto-immune problems are over run in my family, both my sister and I were diagnosed with MS,( my mother had post polio syndrome, which is not auto immune but she had never been tested for any auto immune problems because of the polio, but she was symptomatic like me) as well as Lupus anticoagulant. I am on warfarin and aspirin due to many blood clots and the aspirin for my heart. I have been on Warfain for about 12 years but they do have a problem with regulating me due to other illnesses and many infections. It does get very depressing but I do feel somewhat more alive and with it when my INR is about 3. I did however get off the Warfarin against my MD's advice because my mother had problems due to bleeding out and had to have her intestines cauterized so many times, she was on warfarin for many years. She then passed away with both her liver and intestines turning black and dying. My memory is so bad and I cannot remember the medical term for it. This warfarin does scare the heck out of me, but as my Dr says its a better situation for me taking it vs having a blood clot go to my brain, heart etc. Does anyone else have fears with taking Warfain?


How often does the Dr test your INR? If it is very difficult to test often there are other anticoagulation drugs to take. Plavix for ex and LMW Heparin. So you do not have to have a clot.

Try to talk to a Dr that understands APS.



Thank you Kerstin, he tests me every 2 weeks. Please read what I wrote in reply to Tom's comment . Thank you again, Darlene


I have read it again. I am not an expert but I have APS and I know that the most important thing is to be correct anticoagulated. I have Lupus Anticoagulant (which does not meant that you have got Lupus but it is an antibody detecting APS).

You must have a doctor that can do the correct tests and who also understands what is wrong with you. I can hear that you have not the ultimate drugs to treat you illness(-es?) Many on here have both Lupus and APS. It happens quite often that you can be wrongly diagnosed to have MS but it is APS. That is why it is so important to have an APS-Specialist. He knows what to look for!

I understand that you were taken off warfarin against your doctors advice. You must have something to thin you blood. I have also lung and heart-problems as many of us and it is due to APS.

Read about APS and how to thin our very thick blood.



Lupus anticoagulant is the old name for what we know call Antiphospholipid Syndrome (or Hughes after Graham Hughes)

I remember when I was worried about going on warfarin- but I worry less now after over 40 years on it. I have regular liver function tests, and lord knows what else.

For most of those 40 years I avoided aspirin like the plague- but when I had a hole in my heart closed, I was put on aspirin as well for about three months. I understood that they were basically covering all the options.

Hope that helps a little


1 like

Thank you Tim. I believe this is what the Dr is doing, covering all options because of a clot that blocked in my bifircation of my aorta, stents were put in back in July. Since then he has kept me on the aspirin with the warfarin. All these medical terms really confuse me, because on the paperwork it states Lupus anti-coagulant and Antiphospholipid syndrome as 2 different entities if I am reading it right. I just got back out of the hospital after being in intensive care with the flu. In the hospital I had Warfarin and Lovenox shots. I came home with 4 shots to finish off. Because of all the issues and not being able to really keep my INR under control, they test me usually every 2 weeks and adjust it accordingly. They regularly do liver function tests as I have a "fatty Liver"., what ever that is. There has been so much going on that I am almost always afraid to ask or just forget until I get home, then questions pop into my head. But...this all still confuses me and worries the heck out of me. Thanks again..and wow 40 years on warfarin.


I was offered Clopidogrel (Plavex) as it was also suggested to me by Prof Hughes to go along with my Fragmin if my headaches did not clear up. Again its the anti platelets that work differently that can relieve symptoms that Fragmin and warfarin don't quite get to because they work differently. It may not be as common as warfarin on its own but having the two is reasonably common.


This is very interesting that for example aspirin and warfarin work differently. We have the same word in our language for them, like anticoagulation (you have antiplatelet as well). It would be interesting to read something about how they work differently. I am not medically trained, but it is always interesting to find more about these things. I think it could explain why Aspirin alone didn't relive my symptoms. If someone knows an article about it, I am interested. :)


I also think this is very interesting. I did not know it was common with both together but that depends on the symptoms no doubt. Actually I have not read about it.

What I am wondering about is that if you use Aspirin together with Warfarin, you do not have to keep the same high INR-value to be well protected from clots.

I am not Medical trained either but very interested. I am going to ask my doctor when I see her.

Please tell me also if you hear something. You will succeed. You are so determined which is good. You also know so much about warfarin and INR. Good luck!



Thank you Kerstin!


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