Sticky Blood-Hughes Syndrome Support
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Warfarin: love & hate

I've been on Warfarin for the last 6 months and although it makes me feel good I can't stop thinking about what side effects it will give in the future as I was told it's a medication for life...I'm only 44 and I'm also on Tyroxine (for Hypothirodism) I was diagnosed with Lupus as well but have no symtoms so far...God knows what else it's on the way....

7 Replies

Hi Cala

Welcome to this site. Here you will find lots of help, support and advice. We a friendly bunch who share this horrid disorder. I`m 47 and I cant help wondering what the future holds, I know though that I would sooner take the warfarin than have any more clots. Only side effect I`ve had has been bruising and skin sores don`t heal so fast. I`m sure some of the others will be along to share there experience of warfarin.

Take care, gentle hugs Jessielou xxxxx


Hi welcome to our ever growing family! x

Yes 10 years ago when I had to start taking them I cried :( as I wondered what long term on these would do plus there would be no going back once I started to take them....then I thought of what might happen if I didn't take them ?......scary!

Hopefuly they are not doing anything but helping us, unlike maybe drugs like steroids?

Just think possitive, if any problems do arrise through taking them I'm sure they will find an alternative.

Take care Sue x



I can relate to the feeling of love and hate. Hughes is one long ride without an exit point I was dx in october last year at the age of 28 and put on to warfrain lifelong i have never felt so alone ( i mean in my world warfrain was something my gran took) not something i would need to have.

10 months down the line and things couldnt be more different. I found that i am better on a blood thinner weather it be warfrain or clexane and it really not that bad and like sue say i think i am more scared of would may happen if i have another clot.



Hi all

Hope all feeling ok today, Just wanted say to Clare, I hope you don`t feel so alone anymore hon, so glad warfarin and clexane helping,

For us all I think the the risks are far outweighed by the benefits.

Cala if you still concerned talk to haemotologist or rheumy, they should be able set your mind at ease. I do know a lot of much older people on warfarin, not for hughes, and they say its a lifesaver.

Sue I hope you had good gig last night, see you soon,

Take care all, gentle hugs, love Jessielou xxxxxxxxx

Ps I hope this makes sense cos on new med and feel weird, worse than hughies brain xxxxxx


Hi Jessielou,

I am not alone i ve got my hughes bubbies right by my side. As the saying go Hughes isn't all that i am, in fact it has opened doors that have allowed me to meet some wonderful people



Hi Clare

Every cloud has a silver lining. Such tough and lovely people I've met through Hughes. Not glad to have it. But very glad to know you all at my side too.

Take care gentle hugs love Jessielou x(sheena) x sheena:-) :-) :-) xxxxx


Hi Clare

I am a warfarin "junkie" I have to say that it got my life back and I can not imagine life now without it (or an alternative)

I think it's brilliant! Oh to go back 4 years ago I was in a real mess before Warfarin treatment.

Good luck



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