Sticky Blood-Hughes Syndrome Support

Inr still rising slowly

I've been on warfarin for about 5mths now and I've gone from 1.7 to 2.6 since then, With it fluctuating up and down... Went from 2.4 back to 1.9 and so on. For the past two months I've been on 6mg daily and 2.6 is as high as it gets... Do you think 6mg is a high dose?? I have APS and I know it should be 3-3.5. I know people on 2-3 mg daily and they're getting higher readings!!

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I'm no longer on Warfarin but when I was, I had crazy fluctuations. The dose for a stable INR can also vary wildly from person to person and what you eat can also affect your INR. You possibly need higher dose to get yours to rise and chat to your doctor about a therapeutic level.

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Hi,

I start with asking if you have got a Specialist who understands autoimmun illnesses like ours? What therapeutic level of INR has he put you on?

The amount of Warfarin is individual from person to person but the INR is the same and we usually have very thick blood and therefor need a higher dose than "normal" people on Warfarin. I feel best around an INR of 4.0. My therapeutic dose is 3.5 - 4.0 in INR.

I read that you tested very often and everytime in your vein. Hope you now also take fingerprick tests. It is important to doubletest in the beginning to see if there is a difference between the vein-test at the lab and the fingerprick-result.

I can tell you that I take 5 mg Warfarin each day but I also eat a lot of green vegetables and it is important, as APsnotFab told you earlier, to eat the same sort and amount of them to keep steady.

If you drink one glass of wine for two days and then wait some days the INR will raise and the clinic must lower your dose etc. I dink one glass of wine for dinner every day, but only one glass. It takes 2 - 3 days for the INR to change.

It would be good if you could selftest. Are you Lupus Anticoagulant positive? Make notes of what you eat and date and INR etc etc. Then you will learn.

Warfarin does not suit everyone of us and some of us take LMW Heparin instead of Warfarin.

Please let us hear how it goes for you!

Best wishes from Kerstin in Stockholm

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We all need a different dose to achieve the same result and our dose isn't always the same. Last year I took 3mgs to maintain a range of 3-4, currently I'm taking 6mg to maintain 4-4.5. Anything and everything can affect your Inr, apparently Morphine doesn't affect it but it certainly does for me. It does sound as though you need a higher dose to achieve your target range.

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My INR was very unstable for many months I've now been stable at 2.7-2.9 for a few months I'm on 5mg daily I've been on Warfarin for nearly 2 years

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Hi Dot69,

I have read that you looked for a Specialist and got a Neorologist who did not listen to you. I wonder if you still have high blood pressure and that horrible headache?

You should have a Doctor (Specialist of autoimmun illnesses often a Rheumatologist) who listens to you and is interested to get you properly anticoagulated perhaps higher then 2.7 - 2.9. Prof Hughes, as you know, says most of need an INR of over 3.5 and I feel best over 3.5 and around 4.0.

If you still are not satisfied with your treatment you should continue to look for another Specialist. This is a trial and error and a fight for us all to get to the right Doctor and treatment.

Best wishes from Kerstin in Stockholm

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Lovely of you to keep me in mind and your information I see the neorologist tomorrow after I had an MRI scan it shows 'stuff'!!! Headaches 'none' for a couple of months so great to feel 'well' I'll find out more tomorrow

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Hi Dot69,

Please let us hear how your appointment with the Neurologist turned out!

Kerstin

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Neurologist app went ok this morning I have a small cyst/ abnormalities but nothing more sinister 😏 I've felt well for a couple of months (nice) I see him again in 4 months Thank you for the interest

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Hi Dot69,

Glad to hear that your appointment was ok.

What therapeutic INR-level has the Neurologist put you on after your appointment? Hope it is over an INR of 3.0 at least.

Kerstin

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2.5 -3.0 is what he says is ok 😏 I quoted Prof Hughes and this forum but I don't think he was swayed!!!

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Hi,

Hope you change to a Rheumatolgist who understands autoimmun illnesses and especially HS/APS as an INR of 2.5 is too low!

See to it that you do not go around with too high bloodpressure. Usually headache needs a higher INR also. Hope you find a Specialist who listens to you. They usually do as they are not afraid but interested to treat us.

Kerstin

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Hi, my usual dose of warfarin is 20mg daily.

We like my INR to be between 4 & 4.5.

When I'm below 4 I have terrible headaches and all my muscles hurt.

When I'm below 3, I feel so ill I can't get out of bed.

Don't worry too much about your inr go with how you feel.

Don't worry about the dose of warfarin what is important is the INR.

Your dose should be raised slowly until your inr is within range.

Your range should be one whereby u feel well at!

I hope this helps. Good luck 💋

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My Range is 2.5/3.5 3.0 ideal I have been on Warfarin since 1992 And have been up and down most of that. If you eat a regular diet then it should get into range and keep pretty close. All Barassics will lower the INR such as brocilli or most dark green veg. I have multi-conditions which means a medicine change often it seems I am now taking 5.5 warfarin my last result showed 2.7 today.

Be well

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Gaqn Please remember it is not the dose size that is important it is whatever it needs to get you to your specific INR range. Everyone metabolises warfarin differently because of the associated influences of life, diet, drink, stress etc. Therefore some people will take 5mg to achieve the same goal that others will need 15mg for.

Please do not compare or worry about the amount, just concentrate on taking what is needed to get and stay at your target. Consistency is your friend.

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Hi! I've been on Warfarin since January of 1996. Initially the APS manifested as severe jaw pain (trigeminal neuralgia) as the sticky blood was causing jawbone to be ischemic. This ischemia caused swelling in the closed interior of jaw bone which put pressure on the nerve running to teeth. Nonstop toothache like pain that did not stop for 8 years. Then apparent TIA's started.

It took from January of 1996 to October to get my INR consistently increased enough to allow adequate blood flow to jawbone and nerve. I almost gave up and I am so glad I did not. When the pain stopped, it sort of MELTED away.

I currently take a 3 day Coumadin cycle of 7.5-7.5-8.0 mg. Since I have joined this site early this year I have learned that a target INR of 2.5-3.5 is not high enough for me especially since I still have daily headaches. So I am working with a new target range of 3-4 and still am not consistently in that range. I'm still working on that but I WILL get there, no matter how long it takes.

Keep fighting the good fight!

Nancy in West Virginia

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