According to how you feel (not what y... - Hughes Syndrome A...
According to how you feel (not what your doctor suggests), what is your ideal INR?
paddyandlin107 VotersPlease select one:
Semi skinned milk
No doc/hospital has ever done this tes here in Australia, though I've had 3 strokes since 1978 and much other. Positive d/x from London 2010, but no docs here are helping in any way. Since mid 2011 on Plavix, as suggested by London before
The ONLY time I didn't have a progressive headache requiring Percocet was when my INR was at 4.4. The anti-coag clinic was freaking out about it, I was loving how I was feeling. Felt more "in tune", headache was minimal, best 8 days or so until it dropped back down to "therapuedic" (2.5-3.5).
I have found that my ideal continues to fall the longer I have anticoagulation treatment. It is now 10 years and my eye disturbances were the last nasty symptom to disappear and I have been free of the amaurosis fugit since july 2002! I have self managed my inr with guidance at times since 2004. A repeat brain scan showed that the damage was no worse in 2009!
gemma2012
Dr. never lets it get above 3 but I always (86 %) of the time have a head ache... I had a TIA last Sunday Arterial INR was 1.7.
After I started waran most of the neurological problems disappeared. No double vision, no vertigo no cold blood. I could read, the blackouts also disappeared but my memory is still odd. my balance is not good. As a matter of fact i cannot say if it is better with high INR och low but of course it must be above 2.5! I have also pulmonell arterial hypertension.I have lupus anticoagulant and a selftesting machine. So my INR changes from day to day. It is important to eat the same things and to make notes. If I could guess i think it is best around 3.
My theraputic INR is now 3.5 to 4.5, it was not on the list.
Initially it was 2-3, I still had brain attacks at that range so it was increased to 3-4.
However it was unstable and often would fall below 3. At that point I would have another brain attack.
We finally setled on 3.5 -4.5 because the INR clinic then tended to try to keep it on the high end of the range.
Due to the brain attacks when it fell below 3 I now have a written treatment plan to get tinzeparin when it drops below 3.
I find that if I drop below 3.2, all of my symptoms return (fatigue, brain fog, brain squeezies, confusion, joint aches, difficulty walking, etc.). If I am closer to 4.0, I feel almost normal. The only symptoms that never go away are the memory issues and brain squeezies. I have scar tissue from TIA's, though, and the odds are that those symptoms are permanent.
I have been selftesting since 2004 and on warfarin and aspirin since 2002. My need for my Inr to stay in my range of 3-4 has gradually diminishd over time and I have not had the eye disturbances since 2002 ,4 months into anticoagulation. I have been a gym member since 2004 and I found my memory repair dramatic after the 3 month rehab course soo I carried on! I have anticardiolipin antibodies which seem to mean the self test is more reliable. I don't stay out of range at lower levels for very long. An MRI of my brain in 2009 showed no further damage!
I voted for what my doctors want my range. My INR is not yet regulated and still all over the place.
Hi mylafont,
How long time has your INR been all over the place and at what therapeutic level has your APS-doctor put your INR of warfarin?
As you say that it is not yet regulated I guess that you have just started your treatment. Please come back to this site if you want further help in the future.
Kerstin in Stockholm
I've been on warfarin since diagnosis in August of 2014. I have yet to get the same results even twice in a row, so my warfarin dose changes with each result. My doc wants me at 3-3.5. tested today at 3.1. crossing my fingers this might be it. Test again next week.
Was testing via finger stick in the beginning and now drawn from vein. I've had a couple of things seemingly cause INR to go way up or go too low (food, other meds).
Sorry I did not understand why you have to change your warfarin dose if you have the same result twice in a row.
I was also at an INR between 3-0 - 3.5 but it happened that i went under 3.0 where I am afraid of getting new clots. My Hematologist agreed to let me have 3.2 - 3.8 which suits me better.
I selftest and I am also Lupus Anticoagulant (one of the 4 antibodies pointing to APS). Those persons tend to have difficulties to remain at the same INR level.
It is difficult for us to keep in range. My advise is that you write down if you take a new drug, if you have a virus, if you change your dose and also how much you take every day of vit K-rich vegetables. To go up in INR is more difficult and takes longer (for me up to 3 Days) than go down in INR for ex with green K-vit rich vegetables (for me around 15 hours if I eat broccoli or brusselsprouts).
Best to you from Kerstin in Stockholm
I have not had the same result more than once in a row it's bee anywhere between 1.1 and 4.5. Is there anything published about how long it takes certain VitK foods to affect your INR? I haven't been on it long enough to know how either too high or too low makes me feel. I am learning what makes it go up and what makes it go down, just not how long it takes for either based on the foods or meds I take. Either I'm not looking in the right place or there just isn't enough info out there.
So far this site better describes my symptoms and there are more recent posts on this forum compared to others.
Thanks,
Yvonne in Thibodeaux, Louisiana
I am Lupus Anticoagulant and selftest every second day. That is why I know how it works for me but we are all individuals. But I have listened to others here also.
It is only a couple of K-vit rich Foods that change the vit K-value very much; Broccoli and Brusselsproouts are among those. We need those vegetables and they make our INR more stable but of course we should not eat too much of it and Always the same amount.
If we wish to take down our too high number we can eat a little more and in one day the INR is lower. Then you must not change the amount of warfarintablets also because then it will have a "double" effect. Hope you understand me. It is really difficult to Think in tablets and vegetables and INR.
I Think it is common that the Central nervous system is attacked from the antibodies in APS. I had Vertigo, Eye- and balance problems among others.
I suggest you read "Sticky Blood Explained" by Kay Thackray. She has APS herself and explains how it is to live with this illness and explains also all the different symptoms, also neurological sumptoms.
Hope your doctor understands APS. That is exstremely important. We have found that the neurologs do not "get" what this illness is about. Too thick blood.
How old are you Yvonne? I am 70 and have two grownup daughters and grandchildren.
Kerstin
I'm 53. And have two small grandsons. I'm going to seek out 'sticky blood explained'. Thanks for that info.
I am a believer that listening to others going through what you are, helps as much if not more than the professionals.
If my memory serves me right, I read on an APS sight they are working on a home (self) test machine. I hope it gets approved for personal use. I think it would give me a better under standing of how warfarin and the veggies work in my body and how I feel when my INR is either high or low.
The medical professionals aren't doing a good job helping me understand INR and how, what affects it. My neurologist doesn't really volunteer info. I have to ask her. she is the one who told me it is 'only in my brain. According to her, I am not at risk for clots anywhere else in my body.
I'm grateful I'm not at more risk with it, and am learning how to deal with the neurological symptoms. Especially in public. Right now my docs are trying to determine if one of my more serious symptoms is actually seizures. Waiting for the first test results to decide if more extended tests need to be performed.
How long have you been self testing?
Where did you purchase the machine?
I Think you should try to get an APS-Specialist in Lousiana. As we have noticed the neurologists do not "get" what APS is.
It is also important that you do not go around with too high bloodpressure.
Look at apsaction.org APS-doctors in different countries. Those have a good reputation from members from this site.
I have problem with leaking heartvalves and pulmonary hypertension that go with APS also. The two most important things are an APS-doctor and a diagnose of APS.
I have been selftesting for two years. I got it from my Hematologist at the hospital. As I am Lupus Anticoagulant there is a discrepence between the lab test value and the machine reading. If the labtest value is 3.2 the machine value can be 4.1.
It is difficult but I am so happy that I can selftest and that the hospital here in Stockholm and my doctors are supporting my selftesting.
Come back if you like. We must help eachother. Happy Easter in Lousianna!!
Kerstin
I am going to check out the list of APS knowledgeable docs on the link you sent. I am a member of another forum here in the US and they list specialists as well. There is one about 80 miles away from where I live I've considered visiting just to make sure my current docs are doing what's right for me. My neurologist is pretty knowledgeable and so far I'm happy with her.
I've been on warfarin since diagnosis in Aug 2014. I have yet to get the same results even twice in a row, so my warfarin dose changes with each result. My doc wants me at 3-3.5. tested today at 3.1. crossing my fingers this might be it.Test again next week. Was testing via finger stick in the beginning and now drawn from vein. I've had a couple of things seemingly cause INR to go way up or go too low (food, other meds).
I have somewhat rare form of APS... only in my brain. It's attacking my central nervous system.
BTW, glad to be here.
Therapeutic INR for me is 3.5 - 4.
Any time I see a dr who thinks otherwise, I don't go back 
