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Sticky Blood-Hughes Syndrome Support
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Conflicting GP advice

I had a few clots 20+years ago , was diagnosed as having APS on warfarin for 5+ years. Then consistently tested negative for all clotting disorders. I came off warfarin and was just on Aspirin no problems for years. Have felt a bit 'off colour' for a few months and at the beginning of July discovered I had a smallish DVT. Still waiting for my clotting screen results.

I was on Fragmin and Aspirin until my INR was above 2.

Came up nicely - to 3.3 at 5 mg . Reduced dose. It dropped to 1.6. Increased my dose brought it up to 1.8, further increase to find it was 1.4 yesterday! (Diet is pretty standard, Vit K intake pretty steady)

That is less than 2 for 12 days. I'm away from home and had my INR done but my dosage done by my GP (phone). He has said to go back on onto the fragmin until my INR comes up. Went to see the local gp who refused to prescribe the fragmin.....but would be happy for me to take aspirin on the warfarin.

Anyone any experience of this?

Waiting for (supposedly) a prescription to be faxed etc after speaking to another GP at my home practice....but not sure that GP thinks the fragmin is a good idea...

9 Replies


Well, I was on Warfarin for 10 years, self testing and self dosing for 9 of them. Then Warfaring seemed to not be dealing with my symptoms effectively, any more. So Prof Hughes put me back on Fragmin and I have been on it for over two years now and feel much better. I would not willingly go back onto Warfarin.

Best wishes.



If you can get your hands on that script then you need to start supplementing the warfarin as soon as possible I think until your INR is at a more respectable level. Some people do take Aspirin and warfarin and I suspect that the local GP refused to prescribe the heparin on cost, possible against their guidelines !

I have to say when I started to read your post and you said that you had come off the warfarin I thought "Oh dear"! My undrstanding is that once you are on it you are on it for life and its not a good idea to stop.

Antibodies come and go but that does not mean you no longer have APS. The reason you have been put on the warfarin is to prevent another clot and obviously the fact that you have had another, albeit small one proves the point.

As Dave says it may be that you might have to consider switching to Heparin completely if your INR does not stabilise. Unfortunately APS is not a very friendly condition when it comes to steady INR's for some people.

I hope things settle down soon.



I did get the script -faxed from my home GP so have started the fragmin - yay! Feel so much safer...have increased Warfarin dose too. I think retest is due Wed but might go on Mon.

I came off Warfarin because I was concerned about long term use -this was 15 years ago.

I was aware of the risks etc - at the time I was advised against it, but my biggest concern was being on it for potentially 50 yrs when such long term use wasn't widely experienced.

(I watched my grandmother die in agony after her back collapsed with osteoporosis due to long term use of steriods - when she started using them they didn't know there was a problem)

I knew risk of clots increased with age as well as APS being little understood , triggers etc and at some point I would likely need to go back onto to it.

I think I am more or less resigned to life long warfarin now - but hopeful for the 'new' anticoagulants...

Last time it took ages to stabilise and I was on a much higher dose (8-10mg). This time it went up like a text book case up to INR 3.3 on 5mg ...slightly reduced dose and it dive bombed...and still going down on increased dose! (And can't see how it is diet related)

I will be buying my own testing machine...

Hate having to battle to get what makes me feel safe....

Hate warfarin, Hate APS.


I think we can all relate to that! I hope things improve for you soon x


I yo-yo on Warfarin I seem to be more stable around 16mg but not sufficient to get a break of more than fortnightly blood tests. Glad to hear you're feeling reassured on the Fragmin.


As some of you here will know, I was tested 12 weeks apart for APS and with a previous young stroke and many TIAs an excellent dr startede on warfarin with a heparin bridge. My INR goes all over the place but very rarely over my target range (2.5 - 3.5). After starting another dr told me to stop warfarin and take aspirin if it made me feel happier! I was of the understanding that warfarin was for life and ignored him and the other dangerous non diagnoses he made. And the original dr agreed with me and wrote a very strong letter disagreeing with him!

I have had a self test machine for two weeks as weekly testing is depressing me. We're away for some time this summer so am using machine and a local clinic. Im hopeful I can soon self test.

Currently I'm on 9mg week days and 10 onweekends and am towards the bottom of rhe range. As others say APS make this unstable and I have had variois infections etc with antibiotics that knock my INR.

I am just going to have to reckon I'll be on it forever more. Don't fancy going uncoagulated as the stroke still scares me!


Lucky & Bonnie -- can you update as to how your self-testing goes?

I'd appreciate any private messages from those of you who have had self-testing issues as I am still trying to figure out mine.

I don't want to return to that over-discussed topic on this board, but being American where self testing and APS is NOT supported (at least by my Health Plan, the APS org here, and by Roche USA), I bought my own machine and am looking for more "statistics" on us who seem to have problems with the self-testing strips (as Roche tells me my body interacts with the phospholipid reagent and I can't use Coagucheck). I'm "only" cardiolipin positive, but with the many of you and even Kerstin with LA positive in Stockholm successful with self-testing, I haven't given up yet. I am planning to spend another $100 on a vial of test strips, hoping I just got a bad batch last shipment since the readings were so off. And yes, I get that drop of blood to the strip in less than 10 seconds and know the instructions backwards and forwards, but my coagulation time is still about 2.0+ off the venous draws at the lab. :-(


Only private messages please, not as a reply on our board (I saw the administrator admonishment from previous comments on self testing)

I don't want a debate to test or not test!!

I'm an adult who researches and can figure my own risks.

I still do blood draws -- my clinic has me now coming every 2 months, which doesn't seem very safe to me in light of the fact I travel and fly a lot.

I'm considering Fragmin to put my anxiety at rest if I can't self test.

I know our bodies vary in reaction to APS, but I'm always open to any more info to shed more light.

Research seems to indicate that PT/INR varies between reagents used (human, rabbit, bovine) and lab methodology but all use the phospholipids, so ? what is the diff between blood draws and finger pricks? The few seconds of oxygen?

Anyway, sorry to bring up the topic.


Hi, you have had some great advice on here from APsnotFab. You may need to push get the hospital to be more direct with your GP regarding the Fragmin prescription! MaryF


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