Heprin allergy

[Lind8]

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 .

[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 Administrator 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]

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]

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