Is it possible to take Lovenox injections (heparin) to treat APS? Instead of Warfarin. I don't think my insurance will pay for it.

[smjohn]

I am on Warfarin for my diagnosis of APS. I had a clot in 2008. I also have Lupus, and fibromyalgia. I have had horrible stomach problems since being on warfarin since 2008. I am sick and nauseous all the time. I do not tolerate the warfarin very well at all. I wish there were another alternative to the warfarin usage.

[Angelpaws]

I had a clot in 1981, another big one in 2009 and a stroke in 2010.

I take Heparin injections instead of Warfarin. I'm in the UK so the insurance thing is not an issue, but my GP keeps trying to change me back to Warfarin because of 'budgets'. I'm not giving in, and I had it confirmed last month at St Thomas' hospital that long term use of Heparin is fine as long as you are prepared to self inject - it seems that a lot of people are not.

I too, did not tolerate Warfarin at all - I felt ill, weak, slow and my blood almost ached if that doesn't sound too daft!! I also bled constantly - nose, gums and periods were hell. Check it out - it may be the solution you are looking for. Convince them it will save them money on other treatments! Really good luck to you, Larraine x

[Skyllark]

My wife has been on Fragmin for 12 years now - had to go off warfarin because she was still getting clots - self injections she does twice a day - the dose for this is based on boddy weight, also can change on how effective you dose is - my wife is on 10 000 units twice daily, not a big girl at all - just the dose she was on before was still not stopping the clots!

[jessielou]

Hi

I have same diagnosis hon, currently on warfarin and due to clot am also having clexane injections, feel cognitive function improving, the fog is lifting. I think will be pushing for permanent clexane as warfarin also affecting me badly and clearly not doing the job as Inr is so unstable!

Hope you can get sorted and insurance will pay for it!?!!?

Good luck hon.

Take care gentle hugs love Sheena xxxxx

[Hidden]

When i saw Prof Hughes he suggested i trial heparin and poss move over to Warfarin which my GP has now prescribed. GP suggested that if i prefrr heparin then i could continue on that and actually the Prof says he knows of long term use and is comfortable. I don't like all the back and forth for blood tests when i am on Warfarin.

[Manofmendip]

Hi everyone

I was on Warfarin for 10 years but was still getting 'funny turns', which I have posted about before on here, and I also had a major clot in my right hip too. So, this year, Prof Hughes moved me over to Fragmin and off warfarin. I still get some 'funny turns' but less frequently than before and, generally, I feel that my anticoagulation is more stable. Yes, self injecting is not fun but you get used to it and, on Warfarin, I used to do a finger prick INR test every day and also had to be careful with certain foods and alcohol but there are none of those issues with Fragmin. Older types of Heparin could cause osteoporosis with long term use but Prof says not with Fragmin. Even so, my GP has sent me for a bone density scan and that will be repeated every 3 years or so.

Best wishes.

Dave

[Coppernob]

Just in case this may be useful, I understand there is a much better tablet available than warfarin - pradaxa. Must more effective (by about 40%) at controlling clots, no dietary restrictions, don't think so sensitive to timing. May be more tolerable to those who can't get on with warfarin. Downside, of course, is that it's considerably more expensive. Even so, may be worth exploring.

[Coppernob]

Also, out of interest, because I think this may become relevant to me soon (seeing Prof Khamashta 21st - yeay!), do self-injecters only inject into abdomen or do you use other sites, e.g. rump, thigh????