Does anyone know scientifically why our symptoms seem to improve as our INRs go up? My hematologist told me today that there was no link between use of warfarin (Coumadin) and resolution of symptoms.
Anecdotally I can surely say that I just went through 2 months of terrible symptoms of all sorts -- the full range (gastro, memory, headaches, aches & pains, GERD, etc.) only to find out that during that period my INR was 1.1 or thereabouts. Don't know how that happened.
Anyway, now that my INR is up to 3.5 I feel much better. He is telling me that it is jus the flare up going into remission. So how do we know it's that and not the actual warfarin therapy?
Thanks
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TheKid
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I know when my inr was 3,8 2 weeks ago i felt great, but, my range 2-3 ( too low) means that Gp's lowered warfarin and now feelin really bad again inr 1.4.
In prof Hughes Sept blog he goes through the issue of inr and symptoms. Is in Hughes foundation blog at top of page.
Many haematologists, rheumies don't yet understand Hughes syndrome and Gp's even less.
So i think as our blood thins we improve cos every part of our bodies is getting the blood supply it needs. I struggling to function at 1.4. Everything hurts!
Glad you feeling better at 3.5, wish i was there hon!!!
The APLS causes sticky blood, the sticky blood means the parts of the body affected (the ones we each have had the problems with) are not getting sufficient blood flow.
If we each are on the correct anticoagulation for our condition our blood will no longer be sticky, and normal blood flow will resume.
Take away the correct anticoagulation (could be when treatment withdrawn, or if on warfarin, when the INR drops) and problems come back.
It's very straightforward once this concept is fully grasped.
Thankyou for that 'Herb'!! I dont know if you've read my post on INR but I have been having an uphill battle with docs' constantly!!
I'll have to write it down as I wont remember it word for word!!
Lol
Yep I agree with you all anyway.....I'm at only 2.1 at mo' & have been hovering there for about a month now!! & I feel like s**t !!
I cant concentrate, so forgetful, slurring, migraines, slow cold right side, pins & needles in arm, leg & in face, also feels like someone has dropped an ice cube in my skull....no I dont like being like this & often feel like I'm being used as a guinea-pig to see how long it'll take before something happens!!
Yep I feel so much better at least 2.8....even more so at 3 +
I think my problems with warfarin were well documented here. Now back on fragmin and things slowly starting to get better however the warfarin really upset my whole system. I think it has sent my thyroid into a bit of a spin and either my sjogrens or fibro is also having a ball. So now have to wait for that lot to calm down!!
I made a complaint about my local clinic and got a call back today from the doc in charge. About self monitoring she said - "self monitoring is not really suited to people with Hughes because their INR is not stable enough and they are too anxious about it". In other words we are a load of neurotic time wasters who will waste everyones resources checking our INR every five minutes!
I told her that Hughes patients are just the sort of patient that should be self monitoring BECAUSE of the fact that our INR is unstable and if it dips too low we can clot. Not only that but Prof Hughes strongly advocates we do self test for that very reason. She changed the subject!
She then suggested that perhaps I might be better on Heparin and when I told her I was now on it she wanted to know Prof's reasoning for putting me on it! Talk about a hypocrite.
My understanding of why our symptoms get better is because our brains don't handle the "sludge" very well. This causes CNS symptoms which are very neurological and we get the idiopathic MS symptoms. Thin out the blood and the brain starts to function properly which then makes the CNS function and so on.
I agree with above. Thin blood (in my case INR 4 to 5) means I function much better. I presumed it was that my thin blood getting to my very large brain (LOL)
I didnt think about blood getting to rest of my body but that makes sense.
Horray for Warfarin!
Have you thought about self monitoring with a Couaguchek xs?
Thanks for all your answers. However, I am still not clear on scientifically what is going on when we feel symptoms. As I know, calling the blood "thick" or "sticky" is just a metaphor we use to describe our blood, a metaphor that does not really accurately detail what is actually happening in the blood.
I have been told by my doctors that my blood is not truly turning to sludge and that thinking of it as being this muddy muck is incorrect.
Have I misunderstood things? Is there really less viscosity to the blood when on blood thinners? Is our blood really turning to sludge and therefore not properly delivering oxygen and other important substances to the organs and body systems?
so called "Blood thinners" affect the length of time the blood takes to clot.
You know if you cut yourself: eventually your blood will stop coming out and will form a scab, this is due to normal blood clotting.
The blood thinners affects the speed this happens, the warfarin INR test is basically a ratio of the time it takes for someone on warfarin's blood to clot versus the length of time a person not on warfarin's blood to clot.
So if your INR is 3 your blood is taking 3 times longer to clot than someone who isn't on warfarin. The different kinds of anticoagulant work differently but its all basically affecting the ability if the blood to clot.
By making the blood take longer to clot inside your body your medecine is stopping the blood sticking together and forming clots ,even 3 or 3 blood cells sticking to each other or sticking to the walls of your blood vessels can case problems, think of it as putting WD-40 inside your blood vessels to help the blood flow smoothly (I just treated a sticky squeaky door hinge with that so it popped into my mind)
Sticky blood is not a metaphor Kid. It is what is actually happening to the blood and as Herb says when the blood is sticky it can stop the proper delivery of oxygen around the body.
This can cause problems in the arteries and the veins causing clots pretty much anywhere in the body.
Hughes Syndrome is an autoimmune disorder which causes the body to think that it needs to clot the blood when in fact it does not thus causing unwanted clotting.
When I took too much Clexane the other week (by mistake Docs think I may have suffered a TIA causing me to become confused) 19 instead of 1! My head was as clear as a bell and I had no pain at all. My memory was sharp and the mental confusion disappeared. Unfortunately I paid the price with an upper GI bleed.
This is of course exceptional. I have a theory that when we thin the blood our immune system tries to clot it even more because it is faulty and this is why it is so difficult for Hughes patients to regulate their INR.
Have described elsewhere how I proved my fingerprick tests were giving a completely different reading to the venous samples once my INR went above 3.5, Venous samples consistently giving a lot lower reading, than the fingerprick.
Having been dosed soley on the basis of inaccurate fingerprick tests it is obvious why my INR was unstable, it was unstable because I had been dosed on the basis of a wrong result.
Now we have gone to venous only (range 3-4.5) my INR has stabilised.
We are all different but I only found this out by chance and maybe it could be the same for someone else, if your INR is higher than 3.5 and unstable insist on venous sample and compare with fingerprick, see what happens!
Herb, thanks for the advice. My Roche Coaguchek read 1.3 while my lab sample taken at the same time read 1.1. My doc was pretty comfortable that the Coaguchek was a pretty good measure of my true INR.
Are you saying that as the INR goes up, the finger prick samples will deviate more? And when they deviate, do they tend to deviate on the high side or the low side? Thanks
"Are you saying that as the INR goes up, the finger prick samples will deviate more?"
In my experience, yes. Low results are ok, its ones above 3 where the inaccuracies crept in. I got many comparisons of fingerprick test over 5 coming back as venous low 3's. So eventually I got put on venous testing only.
"And when they deviate, do they tend to deviate on the high side or the low side? Thanks"
OK my results came back at too high on the fingerprick. Which was bad because I was then lowering my dose when I should not have done and by doing that, I made my INR drop below 3, which put me at risk.
This is my own experience but it was very clear and the staff at the INR clinic worked with me for a long time to be clear this was definitely happening.
For myself I feel better when my INR is higher. I should not say this, but right after a blood test I take an extra dose causing the INR to go high. Then let it drop again just before the next blood test. This is so the INR clinic does not give me a bad time about having a high INR.
in reply to
This made me smile, but also makes me advise you to please be careful. If I were you I would discuss upping your INR range with your doctor, who can then give that range to the clinic and then you wouldn't have to "self medicate".
I also notice a difference when I keep my INR higher. I am less fatigued (although it never seems to go away) and much more alert and "with it". I keep mine 2.5-3.5 currently.
many doctors have insisted that an INR between 2 and 3 is fine, but, like others here, I feel best when my INR is between 3.5 and 4.
I don't have any more problem with bleeding if i cut myself than anyone else as far as i can tell. Coumadin just makes me "normal", whatever that is. LOL
I've been on Coumadin for 10 years without issues. the one time my INR was dangerously low it turned out to be caused by Vitamin K in a calcium supplement. It wasn't listed in the ingredients, and it wasn't until my doctor actually called the company that we learned it was in the chewable calcium. sheesh!
My INR is supposed to be 3.5 to 4.5. We settled on that because I get symptoms below 3 and we found if we kept the INR 3- 4.5 the staff at the INR clinic seemed to want to keep the INR in the low 3s and it dropped below 3 too often. I feel better with a higher range.
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