Fondaparinox

[Annslack]

After a recent visit to a consultant, the option of a move from LMWH to Fondaparinox was raised as an option to reduce risks of bleeding and osteoporosis as I get older. I would be very keen to hear from anyone who has,or is on it . I wonder whether you feel well on it and also whether the transition was straightforward. I ended up in hospital when I transitioned from heparin to warfarin, which was badly managed. I expect it will be well managed this time but I don't want to have inadequate cover at any time.

Be very grateful to hear your experiences

Thanks, Ann

[Sand1985]

I was on fondaparinux during my initial 12 weeks of diagnosis as I couldn’t tolerate lvmh. I tolerated fondaparinux with no side effects at all. And then once diagnosis was confirmed I was transitioned to warfarin.

[Tucson]

I've been on Fondaparinux for a couple of years and have had no issues at all. I was previously on Clexane and was changed because although I appeared to be fine on Warfarin, always in range and no obvious side effects I did however have 3 strokes while on it so it wasn't doing it's job and I refused to take it any longer. I'm totally happy on Fondaparinux and currently take 5 mg.

[loretta1106]

I self test on warfarin & its the only way i feel safe managing it. After not testing w md for several weeks awhile back, I had a bleed & wound up in the hospital. Do whats good & safe for you

[Dot69]

I've been on warfarin for many years and never been offered an alternative, I get my INR checked every 2 weeks or weekly if not in range, if/when it settles could be monthly. I can often tell when it's not in range as to how I feel

We're all individuals so need to listen to your consultant or who is 'looking after you '

[uscglady]

Hi Annslack! I've been on Fondaparanox (sp?) since 2003 and have never had a problem. My transition was easy and flawless! I was always having strokes while I was well-managed on Warfarin. But haven't had stroke since the switch. God bless, Lori A.

[Annslack]

Thanks for all these comments. It's very encouraging.

[smimayjill]

My son, Ben has been on fondaparinux for over 2 years. His APS was diagnosed in 2014 after a clot and for the first few years he was on warfarin which was very problematic because his INR was never stable and he had 2 significant bleeds. He is very happy with Fondaparinux as he feels much better on it and it gives him peace of mind. It has made a very positive difference to his quality of life.

Good luck.

[KellyInTexas Administrator]

well…

I’m sorry to say I did not do well on fondaparinux. ( but I knew quickly- within 12 hours, so switched to lovenox / enoxaparin while I bridged back to warfarin on urgent advice of my hematologist .)

I started to get a migraine, tingling lips and fingertips, and area around my mouth/ chin took on a blue hue. ( all of my APS hallmarks.)

My APS consultant Natasha Jordan ( at that time at the London lupus centre) told me that some patients that had neuro symptoms with APS / and stroke history did well with fondaparinux. ( she worked together with their hematologist, Dr Beverly Hunt.)

I was not one of them. I do know that not all APS specialists have had similar experiences, and surely it’s because not all APS patients are the same.

I would say this: have a back up plan in place ahead of time with your hematologist. It takes 3 Nadirs to get an accurate afXa draw-in other words- 72 hours after taking shot until you can get level drawn. So find out exactly what and when your hematologist would like for you to do if you feel like it’s not working.

[Annslack]

Thanks Kelly. I am sorry to hear that you had that experience. I am particularly concerned that I can get sorted out quickly if it doesn't go well, especially because my consultant is a long way from where I live . I will discuss what options are available with her and the GP before I go on it. Very helpful to know that it doesn't suit everyone.

[Annslack]

Thanks for all the replies. Very helpful to have peoples experience.