Hi all, purely out of interest mainly can anyone explain on what basis 'our' INR target and range is set please?
Mine is 3.5 target (range 3-4), was lower for much longer however. I'm noticing more recently I generally feel better when it's at the higher end of the range, I don't know however if it's me thinking I do or not tho!??
Many on here who have APS feel better when their INR is nearer 4.0 than 3.0.
I is certainly recommended by Prof Hughes.
Dave
Thank you I'll discuss my INR when I next see my consultant I think. I know many have this but my main issue/symptom is fatigue, it's so frustrating. Trouble is Hughes can cause fatigue, however I also have a brain injury where the majority report fatigue and I'm addisonian again causes fatigue. To the greater extent it is what it is however it's hard to find ways of helping myself because it could be 1, 2 or all contributing.
Danny
I was wondering the same thing about the INR and why APS people feel better with it in that range. Mine is lower then 3 and my dr mummered something one time about he thinks INR is not a good test. Other then that statement I have loved him! I didn't question him at the time but the more I think about i wonder
I'm in the states and have APS and a mechanical heart valve. My INR range is 2.5-3.5 since that's what is suggested for mechanical heart valve patients.
From experience push to get your INR target raised if you can. Loads on here will say the same I'm sure. Mine was kept too low in hindsight at 2.5 for about 17 years.
But what if INR won't go any higher ?
What does your APS-Specialist, dr Erkan, say about your INR? Have you talked with him about this? I thought he was in charge of your treatment.
Kerstin
Thank you, I like that explanation v good!
mine is deemed to be 2-3, 2.5 acceptable. in the last 6 yrs it has been 3+ a couple of times, and the clinic dropped my dosage of warfarin accordingly (even though I told them I feel beter at a higher inr)..at the min I take 8mg 2 x weekly, the rest is 7mg. This week I am 2
I am, however, off work, as I struggle with brain fog/depression/ whatever..
the clinic just says 'go to your gp' my gp says go to clinic..round n round. I just don't know what to do. am I imagining symptoms or is it real life.
Hi greenlady,
I read what you wrote here 2 years ago. I wonder if you have tested Thyroid, B12, D-vit etc and if you have now found an APS-Specialist?
Obviosly your INR is too low. Please try to find a Specialist who knows what to look for and knows that if you have got brain fog etc you need a higher INR.
I selftest here in Stockholm. Could that be something for you?
Please let us hear how it goes for you. Ask if you need help to find a Specialist! Are you from Great Britain?
Best wishes from Kerstin in Stockholm
My target is 3.5 to 4.0 and when it drops less than 3.5, I never feel well. I’m much more clear headed at my high end of my range
I feel best at an INR of 3.8-4.0 or even a bit higher. My therapeutic range, set by my Hematologist, is an INR of 3.5 - 4.0 and to take a Fragminshot (not the highest dose) if under an INR of 3.5.
The injection lasts for 12 hours. I may take 2 doses within 24 hours time if needed. I live in Sweden and I am triplepositive with high titres and Primary APS.
Your message was 5 years ago!!! Wow! I just was diagnosed w APS this month nov 2020 after1 year w blood clots in my arm. They haven't gone away yet. I'm seeing a specialist now. My INR is 1.25. Doc says too low. He has me on horrible lovenox injections twice a day 2 weeks now and coumadin which he keeps increasing.
Youlll have to stay on the nasty injections until your INR is where it needs to be. I’m fortunate that mine doesn’t fluctuate much unless I’m sick or something. I’m convinced it’s because I have/do eat pretty much the same things & don’t switch around. Consistency is key to loads of things in life including this in my experience.
Thank you! The specialist thought I'd only need the twice a day lovenox 90 mg injections then added coumadin 5 mg now 7 mg for a shorter time. 12 days now. Bloodwork tomorrow hoping INR rises. I'm 55. Im a little tired but not bad. Only feel bad when I fo injection cause it hurts. What do u suggest for food or exercise. Im trying leas vitamin K foods. Im trying to walk more.
Exercise of any kind is good obviously. Walking is brilliant as you can do if anywhere! I think people get hung up on vitamin K. I don’t eat loads of veg however what I do eat is the same everyday pretty much. I’m an ex gym bloke so I guess I’m used to eating similar meals. I tend to have 3 meals & 2 small snacks a day. I don’t drink enough water that’s my weakness. I’m 47 I was diagnosed at 22 after a stint in hospital...was really unusual in 1995
sounds great. I'm going for a walk now. My eating is never consistent. Havta work on better diet.
Small steps will get you there if you’re consistent
You can eat greens but with greens like spinach, broccoli (high in K-vit)etc it is very important you eat the same amount of the greens every day. I have eaten greens for 8 years (started Warfarin in 2012). Healthy and you will keep a steady weight also perhaps. Exercise (constantly) every day is also very important for our blood and INR.
We need those greens but Doctors are afraid as they know they will lower the INR. If you eat the same amount every day that is ok as then you can take just a little more or the Warfarin (adjust it) every day.
Thank you. This will be hard for me. I have always been an inconsistent eater. One day I might eat a lot of junk and the next day all plant based healthy greens tgen the next day ill eat a pot roast.
I find out today if my INR raised from 1.25. I read on here some people feel much better at 2.0 or higher. I never really feel any different. I've always been pretty energetic and accomplished. Just a little tired I guess. I hope doc doesn't keep me on injections and just keeps raising coumadin. It's too painful.
My INR used to be set between 2-3 which I later realised was too low for APS. It’s now 3-4 & I feel better at the higher end 3.8 personally. Hard to explain how just generally more well I guess
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