Warfarin vs Heparin/Fragmin 10,000 units - Hughes Syndrome A...

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Warfarin vs Heparin/Fragmin 10,000 units

EllaRuby profile image
11 Replies

Hi Everyone,

Really hoping someone can help. I was started on Fragmin for a trial to see if symptoms improved. They have, I would say around 30 percent but was hoping for more. In the 4 weeks that I have been taking it, I have had 2 pretty bad headaches and that was the one thing I thought would definitely disappear. I've been told to stay on this until after an upcoming op in January. After that I have been told to try warfarin as this can make your blood thinner? And should improve my symptoms more?

Has anyone else had better symptom relief/improvement on warfarin compared to heparin? Do some people respond better to warfarin and others heparin? I have been told I would need an INR of around 3.5.

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EllaRuby
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11 Replies
Manofmendip profile image
Manofmendip

Hello all.

My experience has been the other way, I'm much better of Fragmin than on Warfarin. The dose of Fragmin needs to be the correct one for your body weight; I need 15,000IUs for my weight.

Dave

EllaRuby profile image
EllaRuby in reply toManofmendip

Hi Dave,

Thank you for responding, Professor Hughes did mention I might need a higher dose of fragmin but think he wants me to try warfarin next. Do you know the dosing for the different weights? I'm 10 stone, I think thats about 64kg,

Thanks again Rosie.

Manofmendip profile image
Manofmendip in reply toEllaRuby

There should be a weight/dose chart in the Fragmin box. Two tables I think, I use the higher one. x

EllaRuby profile image
EllaRuby in reply toManofmendip

Ok great, will have a look, thanks.

Salty profile image
Salty

I'm like Dave, heparin works much better for me than warfarin at any INR

EllaRuby profile image
EllaRuby in reply toSalty

Thanks for replying Salty, after reading previous threads about Heparin it seems this is the general view felt by many.

GinaD profile image
GinaD

My headaches did not go away as soon as I began taking warfarin. The strokes went away, but the head aches lingered for a couple of years. Though their frequency declined with each month! But my migraine triggers could still trigger one. ( for me it was bright lights in my eyes.). I've not had a migraine for @ 8 years now. So don't lose heart. Talk to your doc about tweaking meds, but you've been diagnosed, you're being treated and that probably means you're on your way out of the hole. Good luck!

EllaRuby profile image
EllaRuby in reply toGinaD

Hi GinaD,

Thanks for responding its just what I needed to hear, I have been wondering if over time my symptoms could improve further, fingers crossed!!

Thanks again, Rosie.

EllaRuby profile image
EllaRuby

Hi APsnotFab,

Thanks for responding, do you think if I was one of the 'lucky' ones that could stay in the therapeutic range, could Warfarin then be better than Fragmin? Or is it just not that simple!!

Sorry for asking another question.

EllaRuby profile image
EllaRuby

Thank you for responding again, the reason I'm so interested in the two's differences is because I'm 31 and desperate to be well enough to have/look after a baby. I'm allowed to stay on Fragmin because they know I would like to try for a baby after my op. But as it stands, my improvement so far from the Fragmin is not enough to do this, so was wondering if I would feel well enough on warfarin. Is it fair to say most people feel better on Fragmin/Heparin? But due to the cost they're not allowed to be on it long term?

Sorry to be annoying but another question!! Did you find when you first started Heparin/Warfarin your symptoms continued to improve even more overtime? Xx

EllaRuby profile image
EllaRuby

I think your right, especially when you've been unwell for so long. Thank you for taking the time to get back to me, I really appreciate it X

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