Sticky Blood-Hughes Syndrome Support
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Re heparin

Hi I was just wondering how many of you are on heparin if you haven't had a clot . And do you think this is something we should be on regardless if we haven't had one . I'm seeing prof Hughes this month because of my funny turns and should I suggest using this I just wanna feel better. Also if you wanted to stay on the heparin do they allow this or do they make you take warfarin. Thanks h.

5 Replies

There is some debate about heparin. My GP would not prescribe it on the NHS as she would not take responsibility about side effects. However I felt re-assured when speaking to Prof Hughes about this and that it was fine for me to administer. I was prescribed it to help my pain amongst other things when I had a nasty flare-up (sjogren's syndrome.)


I have been on heparin since being diagnosed with Hughes syndrome 18 ago . I have not had a clot but a stroke from hemiplegic migraine which resulted in Horner's syndrome . I had many severe hemiplegic migraines before taking heparin daily but these have been cured by the heparin . I am under Dr. Khamashta who feels long term heparin use is safe


Hi, have been on Heparin for about 3 yrs. I went to London Hosp and saw Prof D'Cruz privately because of worsening headaches, dizzyness, brain fog and loss of memory. Headaches would go on for days and above symptoms were coming in bouts which were beginning to run into one another so I was never without them. Prof D'Cruz ordered a number of investigations including an MRI which I had at St Toms, I had been seen at the Lupus Unit there for the past 10 yrs.

The result of the MRI showed I had changes indicating small vessel Ischaemia in my brain consistent with the effects of APS and they phoned me to suggest I went onto Clexane for a 6 week trial and then onto Warfarin. The results were good and I quickly began to feel much better but have stayed on the Clexane resisting taking Warfarin cause my stomach and digestion is a bit of a mess.So far no unpleasant side effects just some bruising which is more or less standard.

I'm sure your appt with Prof Hughes should go well he is a lovely man and really listens to his patients or certainly did when I saw him when he still worked at the Lupus Unit.


I am 44, had debilitating daily migraines, trouble thinking, stuttering, and bone pain with an MRI that was positive for stress fracture vs avascular necrosis in my foot (which are both well described in Hughes syndrome). I have never had a clot (but my brother had a major thrombotic stroke at age 44). I underwent a trial of heparin after a trial of aspirin did nothing and all of my symptoms quickly resolved. I did switch to warfarin which worked for about 4 months and then stopped working. Also my INR's were extremely erratic and so I switched back to lovenox with good result.


Hi. I've been on heparin for about 2 years. it has been more effective than warfarin and aside from the inconvenience of daily injections has had no side effects.


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