Sticky Blood-Hughes Syndrome Support
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Heparin trial

Hi all, I'm due to see my rheumatologist soon, would it it be acceptable to ask about a heparin trial because I feel the 300mg. Of aspirin daily is not doing the job anymore, I seem to be getting a lot of headaches/ migraines again. I had a letter after the last bloods were taken 6months ago to say I must take my aspirin regularly as the acl. Antibodies were running high. Look forward to your answers thanks Elfie.

6 Replies

Hi, it is perfectly acceptable to go through the various treatment options with your Rheumatologist. Do write down all your symptoms etc, for the appointment to be clear about everything. They may want to discuss Warfarin with you as well as Heparin, but no harm in asking. They are clearly keeping an eye on you if you are having that reminder about your Aspirin, be clear to tell they how unwell you are feeling, and how often as this is very important, best of luck. MaryF


Hello Elfie

I agree with my colleague Mary.

I had a Fragmin (Heparin) trial and found it worked for me.



Thank u for you replies, is warfarin a bit drastic if you haven't had any clotting episodes? I'm asking because I've had. Itp. For about 20yrs. And was told my platelets were not functioning properly. Although having said that platelets range not as low since aps. Diagnosis. X


Hi Elfie, Have you been on Plaquenil earlier?

I think you shall tell your APS-doctor that you are not feeling well anymore only on Aspirin. Absolutely.

Best wishes to you from Kerstin in Stockholm


Yes thank you kerstin i will do that as soon as i get my appointment .best wishes elfie


Most of us have found that it is essential for us to consult with a doctor who has experience treating APS. Bleeding is of course a problem with warfarin; but since our blood is sludgier then the norm, excessive bleeding on warfarin is not as much an issue with us. I have been on warfarin for 14 years. I am an avid hiker. Even when I fell and broke my leg (slipped on the snow) I hardly bruised at all. And my INR was around 2.5 then.


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