im not toletrating warfrin as tests show it my blood bt has no effect on my inr.....im injectin 15.000 units of fragmin daily.......... i was on the wrong dose 4 a while of fragmin...... im nw waiting to see consultant about any alternitives.... anybody knw the alternitives.......
also i keep wakin up with swollen lips eyes n mouth looked like i had stroke 1 mornin..... no1 cld help..... it goes dwn bt comes bk any ideas wa cld b
Hi there I echo what is said above, Rach, although my knowledge is not as clear as APsnotFab as I am only on aspirin twice a day, however it does sound as if you need systematically detailed care stemming from the right clinic, with people with the knowledge there, who you can contact when this sort of things is going on. If they are not clear, they may need to ring St Thomas' Hospital. Sorry I can't be any clearer than that, hope it resolves for you. Mary F x
Fragmin is a great alternative to warfarin. I have never been on warfarin but have had fragmin for over 3 years and it has proven to be very effective. I would say that 1500 mg sounds high I would think 100mg is normal but that is obviously for your dr to decide
Hi Rach
I used to be on Warfarin but I am now on Fragmin and, like you, I inject 15,000IU per day. Fragmin comes with a leaflet that tells you what the dose should be for your weight, there are two tables in the leaflet and you need to use the one that has the larger doses for your weight. 15,000IU per day is the corect dose for someone weighing between 69 & 82 kg (151 to 181 lbs) [10.8 to 12.9 stone].
I hope this is helpful.
If you are on that dose of Fragmin you would not need Warfarin as well.
Best wishes.
Dave
Great, helpful advice! Mary F x
Thanks Mary.
I've just been to my GP and she said the PCT is kicking up about me being on Fragmin and no longer on Warfarin; as Fragmin is a so called 'red list' drug and should only be prescribed my Consultants and then only for a month at a time without me seeing them again! She said that I wasn't to worry and that she was going to have it out with them, given that Prof Hughes wants me on it for life!
Do PCTs not realise that we have enough to worry about with APS without having to worry about them cutting off our medication and killing us!
Grrrrrrr!
Best wishes.
Dave
Yes... grrrr, keep us informed. Mary F x
My GP is wonderful and told me not to worry.
I'll set our beloved Prof on the PCT if they try to kill me.
Mwah to everyone.
Dave
aha... I am more educated myself now, not having fragmin unless pregnant! Mary F x
Hi APsnotFab
Thank you for your response.
My dose of 15,000IU was set by Prof Hughes' colleague Dr. Colin Tench, at the London Lupus Centre and seems to work well for me.
On Warfarin, even with an INR of 4.0 I had a major clot in my hip and ischaemic bowl problems too. The Fragmin dose was set when i had to have a triple heart bypass and come off Warfarin. When i saw Prof Hughes in February he said to try coming off Warfarin and going onto Fragmin, using the same dose as Colin Tench had set for me. I have much less bruising and other bleed issues, (gums etc.) on Fragmin than on Warfarin and, so far, no clotting incidents. However, more importantly, far fewer 'funny turn' incidents, which was why Prof wanted me to try Fragmin instead of Warfarin. Also, Fragmin is much less bother than Warfarin, no dietary issues and no blood tests, even though I used to self test and self manage. I think it gives me much more predictable and consistant anticoagulation and Prof agrees. He has told me several times that he can't give himself Fragmin shots, as he is too scared of needles, so he is not only our saviour but very human too; God bless him.
Love to you all and the warmest of season's greetings.
Dave.
Bowel not bowl problems, of course. lol
That's interesting as I sometimes find that I cannot press the plunger down in certain places on my tummy and I'm using 15,000Iu syringes. I've wasted syringes like that because when I pull them out to try another place the pressure means that the Heparin drips out and I lose a load.
I'm worried about this PCT thing, they have told my GP that I should be on Warfarin as it costs pence a day, whereas fragmin 15,000IU syringes are £8.47 each!!!
They hated me having the CoaguChek test strips too, as they are expensive, so it's a no win situation with them. I bet if I died from APS they would moan about the cost of Cremations, lol
Good luck with staring back on once a day. I do mine in the morning, so that the dose has the most effect when I'm awake and working.
Best wishes.
Dave
Thanks, I will.
Fascinating dialogue between you and AP. just want you to know that your comments are still useful & relevant x
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