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Hughes Syndrome APS Forum

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rach1081985 profile image
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any1 knw alternatives to warfrin and fragmin......... i dont tolerate warfrin well and dont fancy injecting life long...... waiting on a consultant appointment (haemo) since november last year and getting inpatient now.....

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rach1081985
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6 Replies

Hi Rach

A small minority of patients will be intolerant to warfarin, and have allergic reactions such as skin rashes. Currently, the main alternative to warfarin is acenocoumarol. Hope this helps.

Manofmendip profile image
Manofmendip

Hello Rach

Well, I used to be on Warfarin, for 10 years, but I started to get 'funny turns' and Prof Hughes moved me over to Fragmin. Although self injecting is not, initially, an atractive prospect I now find that, on balance, it is better than taking Warfarin.

Warfarin is affected by many things that we eat and drink and requires careful blood test monitoring, whereas Fragmin is a morning injection for me and then live life as normal.

There are oral heparins that are currently being evaluated but these are not licensed for use in APS yet; Kate H may be able to update us on the situation.

So, I think that you may find that if you are allergic to Warfarin that Fragmin may be your medication of necessity for a while at least.

I hope you get your Haemo appointment soon; I must say I have had to pay for a private consultation on several occasions to be able to get an appointment with a consultant in a reasonable time frame. These typically seem to vary in cost from £150 to £200 for a first consultation and perhaps £120 to £150 for follow ups.

Best wishes.

Dave.

Not that I'm aware of but I do know it is used. You could search PubMed to see if there is any literature out there? Some people just cannot tolerate warfarin and injecting with heparin is not only unappealing to most people, but is also very expensive for the NHS, hence this alternative.

Yes, let me know how you get on

InSpain profile image
InSpain

Hi APsnotFab. This is probably extremely controversial to say but never the less I feel I need to say that Acenocoumarol is not, in my opinion, a recommendable alternative. If you look at all the posts from people who live in other parts of Europe, nearly all complain about it. One of its other names is Sintrom (everyone in Spain is given this). It can in fact, as in my case, exacerbate symptoms of APS and is totally unreliable to use especially if you test positive for Lupus Anticoagulant. I have met many patients in the clinic who have lost all their hair with this medication and others with far more serious side effects. Whilst taking Warfarin in the UK I experienced no problems. However, with Sintrom I have had 3 strokes, 2 DVT's, various TIA's and am now bleeding in my joints. Not a recommendable alternative in my opinion.

Annslack profile image
Annslack

I agree with Dave.I am on Tinxaparin injections. As well as the food benefits I feel so much better. Although I still have flares and other symptoms I do actually feel completely normal and comfortable quite a lot which was never the case on warfarin. My symptoms don't vary as much as before. Good luck Ann

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