Heprin allergy: Hi I am on warfarin... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Heprin allergy

Lind8 profile image
4 Replies

Hi I am on warfarin & took heparin when inr below 2.5. I developed a reaction to heparin , hives swollen lips & eyes & itchy mouth & throat. They changed it to fondaparinux injections instead. I am now becoming allergic to these too. Has anybody else experienced this. Getting worried now .

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Lind8 profile image
Lind8
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4 Replies
Lind8 profile image
Lind8

Hi I'm Under a hemotologist & they seem to know about Hughes syndrome. I have platlet problem too so have prolonged bleeding & then my Hughes has caused my clots, stroke etc. So keep telling me there is no other medication I can take as one condition interacts with the other. They are worrying long term about me going into aniphilatic shock now with allergy. I just wondered if anyone else has had allergic reaction to medication & if they found anything at all that helped. Feel like Ive run out of options now

MaryF profile image
MaryFAdministrator in reply to Lind8

I have terrible reactions to medication, but have tolerated Fragmin/Heparin many times in the past, hoping it still is ok if I ever need it. Is your specialists one of our recommended specialists in the UK, and where are you located. MaryF

Lure2 profile image
Lure2

Hi,

I agree with both ladies here that you have to have a Doctor who is specialized in Hughes Syndrome. It is exstremely important that the Doctor knows about our illness to find the right treatment.

Best wishes from Kerstin in Stockholm

Lind8 profile image
Lind8

I live in north wales but travel to Liverpool to see Dr Martlew, she is really good & knows a lot about Hughes syndrome & just says it as it is. She looked at the new blood thinning tablets but because no reversing agent & because of my platlet problem it will put me too much at a risk of a bleed. Guess I just need, as do we all, a new amazing drug that can cure us. I can't stabile my warfarin as my epelepsy medication interacts with it, I take 20mg of warfarin a day & it will still go from greater than 8 one day to 1.5 the next so one & off injections all the time. Hoping to get apt to see immunologist so hopefully they will have some ideas. Thank you ladies

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