Stabilising INR levels.?

[Mystynzl]

Sorry I have another question. I have had 11 blood clots since 2005. Most of them in my abdomen. My INR levels have been all over the place....down as low as 0.9 and my highest being 3.5. I have only just been diagnosed and I had an INR test done yesterday. My level of warfarin prior to this test was 7mg and my INR was 3.5. Yesterdays test was 2.0 and the pathology doctor wants me to go onto 6.5mg. I explained that my GP had said my therapeutic level was to be between 3 and 3.5. I had to argue and I lost the argument. Logic tells me that if I am taking 7mg and my levels drop then an increase in warfarin to bring levels back up is needed, Is it normal to have levels suddenly go haywire??? I have got the headaches back too.

[smallvoice]

Hi there

INR is incredibly difficult to stabilise for those of us with Hughes syndrome, and the clinics are not used to us. It needs much gentle teaching to get the pathology/clinic people on side. I would agree that your logic is right. Can you contact your GP, maybe via a telephone consultation, and ask him to communicate with the pathology doctor? Do you have a yellow book? That should have your target in the front.

So many things can affect INR. Stress, diet, tiredness, the list goes on and on.!

I do hope you can get some help. I think the headaches indicate that you are too low. Please ask your GP.

[bernieembleton in reply to smallvoice]

I agree to your comment. my range is 3.5 to 4 If i go below 2.9 i start with migraines and other symptoms. I have to stand my ground and insist they try to maintain my range. That is why i purchased a coaguchek machine. It helps me keep my range, as i can check anytime i need to, if i feel i am symptomatic.

[Hidden]

Hi

I used to have so much trouble stabilising my INR, I even had my own testing machine - I had to try keeping my INR between 3 and 4 and some days it would get to 7 and then dip to 1.2 and i never had to take more than 4mg of warfarin. This may not help but perhaps you should discuss other medication? I am now injecting Clexane every day and while I don't enjoy the jabs, knowing that my INR is stable is definitely worth it! Sorry, that probably wasn't what you wanted to hear.

Good Luck

Tx

[Mystynzl in reply to Hidden]

Hi and thanks for the reply. Last time I was in hospital with blood clots they me home with clexane injections. It didn't bother me it was just annoying really. I get frustrated when patholgy doctors argue the point with my GP over what I am taking. I currently have a clot in both arms and one subcalvian. I now understand the headache as when my INR is low the headaches are severe. I love this page as I feel supported and don't feel alone anymore.

[Hidden in reply to Mystynzl]

I'm glad - this is what it's all for. Sadly some doctors do take persuading - have you considered changing your GP? sometimes that can help... it is a shame that often we have to get so ill before doctors take note but I have always been able to find a good one, just keep asking and talking until you find someone who gets it AND you. I used to feel ever so low when my INR dipped, I'd find myself crying for no reason, getting very frustrated and tired. Of course I would never recommend not listening to your GP but remember this is your health and if your gut AND pathologist are telling you to up your dose then do it... if you can and haven't already I would thoroughly recommend getting a home testing kit for your own peace of mind even if the doctors don't trust them...

Take care and remember that you are never alone, we know what you're going through and we know it sucks!

Tx

[GemmaIslington in reply to Hidden]

So glad I'm not the only one taking clexane injections now - I used to be on warfarin taking about 10 mg of warfarin plus a day and never being stable unless I restricted food/drink and for a number of reasons now on clexane and it feels like I've been freed (admitedly the bruises are unappealing and not a bit lover of the injections) but it beats the fortnightly visits to the hospital and never feeling quite right!

[Edinburgh in reply to Hidden]

Gosh I was going to say something positive about maintaining my INR at 2.5 - and it always sits between 2 and 3 - but having just read kaythackray's answer I am somewhat paniced! Although my warfarin level was diagnosed by an excellent hameotologist and therefore I have to believe the too high and INR (for me above 3) would harm me....Kate from HS can you advise?

[smallvoice]

Hi there

So glad your GP is supportive. Sorry you are still having clots. The medical profession are wary of long term clexane because of the risk of osteoporosis. I hope someone will listen to you. Have a nice weekend!

[Hidden]

There are more anti coagulant drugs coming... they are going through the testing and licensing process at the moment - i believe that there had been a delay in releasing them to the UK market but fingers crossed that it's our turn for a breakthrough! Tx

[Hidden]

Yes, the new anticoagulants such as Dabigatran have been given a licence for AF in Europe now, and have proved safer and much more stable than warfarin - they don't even need monitoring.

However, until trials are carried out, they will not be suitable for Hughes patients. There is a multi-centre trial taking place between three London hospitals in the near future, but getting the funding has been a nightmare! I think we're looking at least five years before they would be available. But at least it could mean the end of warfarin for those who wanted to move across.

It is highly unlikely they will ever be used for pregnancy as no-one would be willing to take the risk on unborn babies - therefore aspirin and heparin will still be the preferred treatment.

[Hidden in reply to Hidden]

5 years!!!! Goodness me - my consultants keep mentioning it as if it's an option in the next year or so!! that said, I'd rather wait and get a fully tested drug!

Tx

[Carole-J]

I have a similar problem with my INR. My levels are supposed to be in the range of 3-4 with 3.5 being the optimum, I am having tests every two weeks as my levels shoot up and down all the time. Sometimes it is hard to get stabilised on Warfarin but listen to your body mine will tell me when there is a problem and I get it sorted. I think APS is sometimes active and that is when Warfarin doesn't work correctly, at other times Wafarin works as it should.

That seems how it is in my case.

[kaythackray]

I can only answer this as if this were my situation and tell you what I would do. I would take the amount of warfarin I need to keep my INR high enough regardless of what they say at the clinic. A person with multiple clots needs an INR above 3 and if it falls below they need emergency Clexane (heparin) they can inject until it is back above 3. This is the only way to prevent more clots. I never ever do as doctors tell me if I know its the wrong advice. Its my body and I know where my INR needs to be and refuse to allow anyone to tell me otherwise because I want to live and its my life not theirs! xx

[kaythackray]

I know my answer sounds a bit bossy but an INR of under 3 is asking for another blood clot. Any doctor who understood APS would never advise keeping your INR below 3 after so many clots. Do your best to keep it above 3 and believe in yourself, you need to be your own doctor at times as no one cares as much as you do! Trust your instincts as they are right. xx

[Mystynzl]

Thanks Kay. My GP is speaking to the pathology clinic regarding my levels. He is annoyed that they are not listening. He has put my dose right and I should see an improvement soon...

[kaythackray in reply to Mystynzl]

Good Luck and keep pushing x

[ciaronsmum]

Hi. I had trouble getting my INR stable when i first went on Warfarin and it took some time to get there, however, i have a range of 3-4 and i do usually manage to stay in range now. I do have a machine and i do self test every 2 weeks or so. I try not to test any more frequent than that unless i have concerns. I am also very careful about what i eat. I try to get my 5 a day every day and keep my intake of greens steady and that does seem to help me.

Hope this helps xx

[Gadgets]

Hi Took a while to know my best INR range from my speech, balance, memory, dizziness / fatigue. INR 4 to 5 best suits me. My INR is fairly stable now and I bought my own Coaguchek machine which I use every 2 weeks and also have INR check at GP monthly. I tel my results to my nurse and hse advises my on going doseage. I eat lots of fruit / veg but can no longer cope with dark green veg, since vitamin K affects my Warfarin and has a reversal effect.

I have had INR crash when I was having hospital proceedures and taken off warfarin for 48 and 36 hours, both times I had emergency heparin injections to get my INR back up as soon as I arrived at Hospital. It took a few days to get back up to 4 to 5 and that is when having your own machine is great.

Since being on warfarin I returned to work and now have my own business working full time (with the occasional half day off to rest/ fatigue recovery.

[travelnut]

I find maintaining my INR between 3.5 and 4 a real problem. My INR has been too low for last 4 weeks and I have been on the verge of having to take Clexane injections. Now today it has gone from 2.9 to 5.2 in a week and I've had no change of warfarin dose. However, I have been feeling very unwell the last week and have been taking paracetamol and co-codamol and I think they have probably bumped my INR up. I self-test with my own machine so at least I can keep an eye on my readings but I find it very hard to keep in my therapeutic range for any length of time.

[Mystynzl]

Thanks for all the replies. I am unable to buy my own inr test machine as they are around the $1600.00 mark. I don't have health insurance either. I rely on my doctor taking blood tests. I have a test booked for tomorrow. My last result was two and that was a week ago. The pathology clinic told me to only increase my dose by .5mg. I took 7 instead. Since being on two i have had pounding headaches and have had trouble sleeping as my arms ache ( i have a clot in both). When I was up on 3.5 i felt really good...actually I felt better than I have for years.

[tim47]

I have been on warfarin for over 30 years I reckon and in that time had a number of target INR levels. Once I became aware that what was sometimes called 'lupus anticoagulant' was becoming better known and more understood as Hughes Syndrome, and a few more stokes and TIAs etc along the road, I learned from HSF meetings that I ought to be above 3.0 That was met with resistance by my then GP and hematologist and the battles continued for a while until I had three TIA's in a short space of time when my INR was over 3.0. To cut a long story short I was found to have a hole in the heart and I was particularly anxious about the proposed treatment insofar as anti-coagulation aspect was concerned. I decided to see Prof Hughes privately and he set me a target INR of 3.8-4.0 amongst other things. I also have clexane available for use should my INR fall below 2.0. I self-test every other day.

Having a letter with this set out from Prof Hughes has stopped all the arguments.

I've heard some consultants scoff at the target range but I often do well at achieving it. As others have said though, the levels can do their own thing from time to time but at least I can get things back on track pretty quickly. Though testing every other day is not necessary for everyone, it has proved very useful for me and now my GP is pleased that I can monitor it so well as it has helped them to know how it has been when I've had various problems.

If anyone is having real problems with hospital consultants and GPs over INRs for then, for those in the UK, may consider asking for a referral to St Thom's as I am sure they will provide a definitive target INR that few will argue with! (Oh dear, the appointment waiting time could get longer if people ask for this ;-( )

[ClareSteggles]

Like all have said above i don't think there is an easy answer and like yourself i find it very hard to keep my INR in range and it really got my down, currently i am on Clexane injections which has removed the need to monitoring and on going doctors appointment ect........Personally I think clexane works better for me as it saves my time and fits in better with work and social life but as life long option i not sure.

Everyone is different and therefore everyone has a different need you need to work out whats right for you. I ve only just started on my Hughes adventure and i am sure i ve still got lots to learn about myself and the condition.

Take care

[Herb]

I've been on warfarin and aspirin for APLS & Systemic Lupus since 1995 and my INR has never significantly stabliised.

I know other people who have no trouble stabilising. Different people need to take different amounts of warfarin to get the same INR. It seems to depend on the individual's body chemistry.

Recently the consultant has seen I have seizures when my result drops so I now have a treatment plan which specifies I need Tinzeparin when ever my result drops below 3. The clinic nurse or the district nurse does the injections for me.

[teresahunter]

I am taking warfarin, and feel better when my inr is above 3 but I have trouble convincing the warfarin clinic , so as soon as my inr is near to 3 they drop my warfarin down and then i start feeling foggy with headaches again.they have only recently agreed to my target being 3 it was previously 2.5-3, but after persisting how much better i feel when it is higher my target level is now 3, I think no one understands Hughes until they have it!!

[Herb in reply to teresahunter]

teresa, if you get your consultant who initially prescribed your warfarin and set your INR to do a Letter to the person running the INR clinc (with copy sent to you) which specifies how important it is for your INR ro be held in range and what action to take if it falls out of range, this then becomes a Treatment Plan and they are more lilkely to adhere to it.

Many INR clinics are used to people with DVT and cardiac problems with range 2-3 so they do need something in writing because they don't have experience with the highr range and it's importance.

Make this a discussion point next time you see your

consultant as it is very important.

[Jade]

I have been on warfarin since 2004 and stabilising my INR is impossible. Prof Hughes set me a target of 3.5-4.0 but I can cope about 3.3 so aim for this. However mine can be 3.4 one day and 2.4 the next and I have no idea why. I am avoiding dark green veg now as it is really bad for dropping it. I have my own machine and was sacked by my antocoagulation clinic for having it so have been alone testing for 7 years. My GP just allows me to please myself what I do dose wise as he says I know more than him. I test every other day as it is so changeable at the moment. I think the menopause is the cause right now. Any other ladies out there got any ideas on that theory?

[Herb]

Sarai,

Staff at the INR clinic where I go explained to me that the blood circulating around the body is not always completely the same, so one could get a INR result slightly different from the same finger half an hour later. In fact recently my INR came back at 1.2, I asked them to retest and it came back at 3.5.

When the INR goes into the higher ranges above 4 the machine loses accuracy so I sometimes have to get a venous sample. I had a fingerprick test at INR+ 7, after the venous sample it came back from the lab at 4.2.

Also, any changes in your warfarin dose will take 48 hours to completely take effect, so if you keep changing your dose it will make your INR unstable.

I think hormones can affect the result too, but consultant says the antibodies also affect it.

[Herb]

Since my INR was upped to 3.5 to 4.5 we have had a lot of false high results off the fingerprick test, I have challenged the clinic on it a few times and eventually I found that every single fingerprick test in the last few months was t least 1.00 higher than the venous sample, for example a fingerprick test of 5.7 coming back as a venous of 3.4.

A fingerprick test came back at 7 but venous sample was 3.7.

So at the rheumatology clinic last week I showed the registrar my anticoagulant book with all the discrepancies in it and he wrote a letter to my GP and copied to the INR clinic asking to do only venous samples from now on, due to the significant danger of my INR falling below 3.

Staff at the INR clinic have agreed with me that the difficulty we have had getting my INR to stabilise could be because we have been basing the warfarin dose on incorrect (usually higher than actual) readings.

Then when the dose is lowered in line with the inaccurate reading, the INR drops, which puts me at risk of a vascular episode and puts the blood back into the range which the fingerprick test is designed for and will be accuate at... below 3!

Initially I had been told the fingerprick test loses accuracy at around 4, but we have proof in my case it loses lower than 4.

I hope this can be of use to others whose INR does not stabilise.