Sticky Blood-Hughes Syndrome Support
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Unstable INR

Hello again everyone, I hope you are all well and coping in the heat?

Hopefully somebody can help me with this. My INR has been unstable since I began anticoagulation almost a year ago. I take between 15 - 20mg Acenecoumarol a night. Within a week I can go from an INR of + 8 to an INR of 1.6 and so I have to use clexane injections regularly. My target range is 3 - 4.

I eat as closely as possible to the same amount of greens each day, I very rarely drink alcohol. To the very best of my ability I eat the right types of foods, but I can't get my INR stabilised. I know that self testing twice a week isn't usually advised, but my clinical nurse specialist asks me to because my INR is so erratic.

Is this in anybody else's experience? I'm getting married in September and really, really would love to go away but it's so hard to make plans, I have been told I am only safe to fly only if my INR is stable but it just never is. I had my first holiday in years last June and the two hour flight gave me massive pulmonary emboli.

Any advice?

Thanks x

15 Replies

Unfortunately this can be an issue and I have heard about others that have had this problem. In fact I myself never got a stable INR either. I was allergic to warfarin and had to stop and switched to Fragmin. Frankly I have never looked back. Injecting once a day is so much easier, no issues with food to worry about, flying is easier and you can add an injection if its long haul. I rarely even get bruises on my tummy either as Im really careful with the injections. I also think its safer too actually because your dose is constant as there is no worries about INR going up and down.

Of course this is your decision and you would have to persuade your Doctor on cost but if you have really tried and its not working I think you have a case to argue. Maybe ask for a trial and see how you get on.

Let us know how things are working out and good luck in September. x


I think I would prefer Heparin to my existing Warfarin, better for my mwork life balance!


Hello. I too suffer with an unstable INR. I recently had a leg scan and had to speak to the team in the Acute Medical Unit who were very surprised that nobody had picked up on this with me. They have suggested that I try and switch to the new oral anticoagulant Rivaroxaban(?) highlighted at the patients day so will write to my team at the hospital and see if they will fork out for it. May be worth a try? Good luck! :)


Lissy you know they have only just started to trial that for APS so it will be quite a while yet before they will be able to say if it is safe for use with APS. Again if you listen to Prof Hunt at the Patients Day this year when she talked about the new anticoagulants she was keen to impress upon us caution until these trials had taken place.

My advice would be to wait for their outcome and if you cant stay on the warfarin then think about Heparin until then.


Hi and sorry for the late reply, I am having real problems with the site and still don't get a daily updates so not able to keep Up . I do remember them talking about this at the patients day and they were looking for trial patients. According to Prof HuntI would fit her criteria but as Prof Hughes is more holistic, prob don't!


Hi both,

Thanks for your responses, is there any major difference between clexane and fragmin? I asked my clinical nurse specialist about long term clexane, as they use clexane rather than fragmin. He said long term clexane comes with it's own issues and mentioned oteoperosis.

I used to take warfarin, but switched to acenecoumarol when my hair started to fall out! As I understand it acenecoumarol is twice the strength of warfarin, so my 20mg is like 40mg warfarin daily! I've never thought of side effects with anticoagulation, other than not being dead, (please don't be offended, it's my sense of humour, and one of the ways I try to cope...) and of course bruising. I suppose I need to weigh up the pros and cons of side effects with clexane, fragmin or acenecoumarol and speak again to my docs. Fortunately I have a fantastic team, and I am sure they will listen to my wishes.

It would be wonderful not to have to test, to know I was safe because one tiny injection each day is nothing when you know it's keeping you stable. I have to do it often enough anyway. At least it could take me off this roller-coaster I seem to be on. It's always a worry.

Is APS more aggressive in some people than others? When my INR drops I feel so poorly, and I've had so many clots. I have been diagnosed less than a year, but have had a stroke, a TIA, an arterial embolism in my leg which almost was a full amputation and most seriously, maybe, the clots in my lungs. I just want to know that I am as protected as can be so that I can try to stop worrying and just get on with life as best as possible.

I take a lot of prescriptions for various other auto immune problems. I suspect that they are the reason I can't get my INR stable.

Thanks for your help, as always.


Hi Annie

I've recently started on clexane, replacing warfarin as have also clotted whilst Inr very unstable. I'm feeling better and feel so much safer. As you say a little needle every day, a few bruises or ?!?!? No comparisons. I miss my chats with Inr nurse, but not the lurching from one extreme to the other nor do I miss the clots.

I'm also taking aspirin, Not sure whether its the aspirin or clexane but neuro symptoms better too?!? Coincidentally my skin's clearing up, my gp wondered if it was the warfarin causing sores, so that's a maybe!

We all react differently to meds, what works for one may not work for others, but I hope if you try clexane, fragmin it'll work for you!

Take care gentle hugs love Sheena xxxx :-) :-) :-)


I was put on Fragmin by Prof Hughes and Ive noticed some others who are his patients are also on Fragmin, so I guess that is his drug of choice. They are all LMW Heparins and all work roughly the same. Some people also need an antiplatelet agent too like aspirin or Clopidogrel because again this works differently and the two together can help symptoms.

Warfarin works differently again to those two, so it just depends on your body and what suits you. As you say if you are taking other meds and have other conditions that can influence whats going on that is always going to make life more difficult than someone who only has APS and is only taking warfarin in isolation.

One thing I can add is that LMW Heparin do not cause Osteoporosis. prof Khamashta did a study on that. Ive been on Fragmin for 2 years now and my bone density scans show that nothing has changed. In any case I dont think any of us will be on it for that long as in time the oral anticoagulants will be refined and improved and then approved for APS Im sure and we all will be on them anyway!! :-)


Thank you so much! That is very encouraging. I will speak to my nurse about Fragmin - if it doesn't cause osteoporosis I can't see a down side. I have vaguely heard that there are new anticoagulants being tested, so until then I will def. talk to my nurse about it. Thank you :)


Hi Annie--I have been battling the INR roller coaster since 2009 ( sept 1 }- It's landed me in the E.R. about 10 times -visual problems- migraines- poor balance-loss memory- etc. many Dc's-- last new Rhumey has turned into quite a joke -under excessive emotional pressure now in my life so I think that is a lot of my recent bourse. it was so bad yesterday I am off my warf. for the next 2 day's till I test again -testing now every 2 days ' which is crazy but they need to make sure I am not continuing to keep this climbing of my inr .so I know what you mean with this bounce -my 1 st time on new site plan and layout-- boy you can only see a little of what you are typing-and with my abilities at this look out !!!!!! those of you who know me know some times you need to decode my messages :-) :-) :-) -- well hi to all off on another day of DC'S and the rat race---- Annie please let me know how you are progressing -- hope for the best for you and enjoy Sept. to the fullest. you are amassing and a fighter -- keep that attitude - it will serve you well my friend------skin and bones ---scatter brained- but still laughing ------- jet


I too have had a really unstable INR and my haematologist has put me on Clexane. I have to do 2 injections a day though but meh small price to pay :)

I was also Dx with MS 10 years ago and I have been amazed at the improvement in my neuro symptoms since starting on the Clexane, mind blowing difference. I can actually walk unaided for the first time in about 4 years. And of course the relief from worrying about suffering another life threatening pulmonary embolism is wonderful too.

My haemo didn't bat an eyelash about putting me on LMW Heparin. He said it is perfectly safe, doesn't cause osteoporosis and was definitely the best option for me as long as I didn't mind self-injecting. Given Clexane injections are a complete doddle compared to the Disease Modifying Drugs I have injected for MS that really wasn't an issue for me.

Since you are already using Clexane intermittently when your INR drops it may be worth talking to your Dr and seeing if he thinks switching to Clexane permanently would be suitable for you?

Congratulations on your upcoming marriage and all the best for September :) :) :) ,



I have been on warfarin since 2004 and have never been stable from one week to the next. I don't self manage but visit the clinic for a venous sample once a week. When I go abroad, there has never been a problem of finding a clinic to perform an INR and believe me, I have been to some far out places! I hold down a high powered job and certainly don't allow the fact that I am so warfarin sensitive to control my life. Good luck. Paul x


Yes, have trouble stabilising INR.

I normally see a rheumatologist but due to the problems stabilising INR I have been referred to haematologist. He asked me to eat a small portion of brocolli every day. The hospital is doing clinical trials to see if a regular daily intake of vitamin k stabilises INR. So far it has stayed in range with weekly testing.


I had numerous problems re stabilising INR which caused ruptures and my body not being able to tolerate warfarin, a year down the line and a request for a second opinion from a very understanding GP and I have been on Rivaroxaban for 2 months, I have to say i feel fine now and in this time have not been admitted to hospital (which was turning into a weekly event whilst on Warfarin) so I can advise looking at alternatives to Warfarin.


Thank you to all the contributors of this thread you have been very helpful to my own situation. Wishing you all well xx Julie


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