Symptoms even when INR is right??? Or can INR change drastically in one day?

My INR was exactly right (3.6, which has been relieving most of my symptoms) when I was tested Tuesday. Then, within a day or two, I started having symptoms again, more hip pain, shoulder pain, finger joint pain, and my sleep was disturbed, and just sitting still, I'd have that feeling of floating, like I'm moving with my eyes closed.

So, does this happen to anyone when their INR is right? Or, could my INR have dropped that quickly?

(I have been adding more fruits and veggies to my diet, but these are the things I have eaten more of this week: grapes, strawberries, apples, corn on the cob, green beans, tomatoes, basil, cucumber, romaine lettuce, and carrots. I don't think any of those affect INR, though.)

:)Michelle

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  • Hello, I can't necessarily answer your question from my own experience, only being an aspirin girl.... however I know that sometime it can alter drastically, and is affected by what you eat.... somebody I am sure will come on soon and be able to compare their own experiences with yours. Maybe by this time it will have settled again, but perhaps a check in with your clinic/machine etc. Mary F x

  • Hi there :-) i'm currently on Warfarin and weekly blood tests to check INR...one week INR was 2.2 so Warfarin increased to alternate 10mg/11mg...one week later INR is 3.4...biggest jump ever...culprit was too much garlic and maybe paracetamol...i also sometimes still have symptoms eg. tremors etc but these are only mild when my INR is at least well over 2...if it's under 2 all hell breaks loose...i know when it has dropped considerably when symptoms worsen...hope this helps :-)

  • Hi, i'm from the Netherlands and am on acenocoumarol. I am selftesting my INR. Last week for example my INR dropped within 3 days from 4.8 to 2.5 and even taking 1mg more. I have no idea why my INR sometimes droppes like this. But when it drops, my symtomes return and I get a terrible headache. What I do know is when you eat a lot of fruit an veggies you have a bigger vitamine K intake and that is of a great influence on your INR.

    Groetjes Ann.

  • Hi, I had my INR tested on wednesday 3.6(got result on friday) but on thursday I felt so exhausted people commented on ill I looked I was convienced my INR result would be low but it wasnt, dont understand it.

    sharon xx

  • Hello Iwantsimple.

    When I was on Warfarin, I have now converted to Fragmin injections, sometimes my INR was stable for 5 or 6 days and then would either rise or fall sharply. Consistancy in what you eat and drink and in the dose and time of dose of the Warfarin is important. For instance, increasing Vitamin K intake, leafy green, Brussels Sprouts especially, liver etc will antidote the Warfarin and cause INR to fall, sometimes dramatically; the oposite effect happening with a reduction in intake of such foods. Also, sudden increases in alcohol consumption can enhance the effect of Warfarin and cause a sudden rise in INR level. So if you drink alcohol try to drink a similar number of units per day.

    Also, changes in Warfarin dose take several days to take effect and therefore the effect of any change in dose should be observed for 2 -3 days before any further change is made. Only change dose if a distinct trend up or down in INR is detected, do not try to micro-manage every blip, or you will cause instability in INR and be chasing your tail.

    I used to self test and sel manage my INR & Warfarin dose, taking readings every day, or every two days, if I was in a stable patch, but I only adjusted the dose if a trend was seen and then only by 0.5 or 1.0mg at the most, unless I had really screwed things up, such as eating a rissotto dish in a pub that I discovered contained 8 Brussels Sprouts!

    I am finding that my symptoms are much improved since I converted to Fragmin from Warfarin and I'm sure that this is due to the more constant level of anticoagulation that Fragmin acheives.

    Good luck and best wishes.

    Dave

  • Dave I am curious how you were able to convert to fragmin. I asked my GP as my INR swings like a pendulum and he was too scared to make a decision. he refered me to a haemotologist who was adamant I should not be allowed and also disagreed with Prof Hughes protocol for me of 3.5 to 4. saying I was safe at 2. I have no plans to see here again.

  • Hi Jade

    I would try to go straight to the top and either get an NHS referral to St. Thomas's or a private consultation with Prof Hughes himself at the London Lupus Centre, London Bridge Hospital. He will then write to your GP with his advice and it would be a brave GP to ignore him, I would think.

    If you have seen Prof Hughes already and he has set your target INR range at 3.5 to 4.0 tell your GP that that is where you want it to be. An INR of 2.0 would not be theraputic to most APS patients.

    I was well on Warfarin and an INR around 4.0 but then started to get 'funny turns', which Prof H says are TIAs due to sldging of the blood, but the neurologists say are 'atyipcal migraines'. Prof Hughes suggested that I convert to fragmin and that has reduced the 'funny turns' by about 60% - 70%. Luckily, my GP listens to both me and to Prof H.

    Good luck and best wishes.

    Dave

  • Thanks Dave, I have seen Prof Hughes both at St T's and privately. My GP did listen to him, though 2 good GP's happy with my regime have now retired sadly. I never actually told my GP that the haemo said 2 was safe and hoped she did not tell him.

    My problem seeing Prof Hughes is I am in Yorkshire so all in all it can be an expensive day

  • Yes, I can see that it would be. It's expensive enough for me to travel from near Bath to see him every 6 months but well worth it.

    Dave

  • Many of those foods can drastically decrease your INR almost immediately. Consistency in what you eat is of the utmost importance..

  • I looked them up, and they are all listed as low in vitamin k. Is it possible that I'm just extra sensitive to the effects of K? Or, maybe...and this is a "DUH!"...maybe eating 3 or 4 low items equals out to one high item. I hadn't really thought that through, but it makes sense. UGH! This is a frustrating illness. Trying to eat better makes me sicker. That's just wrong!

  • Vitamin K is not the only determining factor of how well warfarin will work. Any changed in stress, physical activity, how much you eat and when you eat can also and often does affect warfarin. For example, simply eating an orange or other citrus food will most likely lower INR by interfering with the absorption of the medicine. Consistency is your friend.

  • I know tomatoes and most lettuce can affect the INR. As long as you are consistent with the amounts you eat you can adjust your warfarin dose to suit. The problem arises when you suddenly change or add something new in. We can't and shouldn't avoid all foods that affect the INR as many do and that would severely limit our diet and impact our health ...just be consistent.

    And yes INR can change from day to day, health, hormones, stress, foods, medications can all affect it and even a minor change can affect how you feel.

  • I'm going to have to convince my doctor to increase my coumadin. I want to keep the veggies and fruits. Gotta be healthy, right?

  • I'm glad that I'm on fragmin now and not Warfarin anymore and I don't have to worry about what I eat or drink.

  • Just got results. INR is 1.3. Has been 3.6. No wonder I've felt so bad this last week. UGH!!!!

    What is the benefit/downside to Fragmin? I'm curious about it.

    I have had the brain squeezies and dizziness and joint pain all week. Now I know why. I hope that when I feel that brain squeezie feeling it isn't mini-strokes causing more scar tissue. Just what I need...more brain damage!!

  • Knock off with the new diet and get your INR to the level needed and stable before you slowly start introducing new foods . Get a home tester for INR and you'll be better off testing INR weekly.

  • I told my doc I was going back to a McDonalds and Starbucks diet!

    I thought I read on here that the INR testers weren't accurate. Did I misread?

  • Only for a few APS patients. Your GP may have one and can test you and compare the results to a vien draw.

  • Okay, that's good to hear. She's leaning toward tweaking Coumadin and diet rather than switching to Fragmin, so a home tester might be good.

    Do you happen to know how long it takes for an increase in Coumadin to kick in? I took 2 mg extra (normally take 3 a day) today. After today, I'm supposed to increase to 3.5 every day.

  • Here, they would have required you to take injections of Lovenox or similar until INR was at the correct level. It takes 48-72 hours before coumadin is effective. Keep your self hydrated in the meantime and is you are not on a daily baby aspirin, take one now.

  • Thank you for your help, Jim! I am finding that the US is WAY, WAY behind on APS. I learn more from talking with you all than from anything I can find over here!

    I've had gastric bypass, so aspirin is out of the question for me. I can absolutely stay hydrated, though.

    I'm flying to Las Vegas on Sunday for our 20th wedding anniversary. It's only an hour flight, but I want to make sure I'm in tip-top shape before boarding the plane!

  • Something to note: I have found that diarrhea can increase the INR very quickly.

  • Also, I've found that significant stress in my life tends to increase my INR, all other things being constant.

  • Really? Hmm...I wonder if that's because diarrhea dehydrates you?? I haven't been at this long enough to know which side is up, but I'm keeping very close watch on all these things. Thanks for the tips!

  • Hi, I also have SLE Lupus with cerebral involvement as well as APS and amongst all the meds I take Mycophenolate which is suppresses my immune system so I have had norovirus and another nasty stomach bug in last 5 months. The first virus affected my INR level from 2.2 to 6.7 within a week! Over the next few weeks it dropped marginally but despite being consistent in my diet to keep my range within 2.5 - 3.5 and following the warfarin clinic's advice, INR dropped to 2, which was interesting as as soon drops below 3 I have migraine like symptoms but without the headache, blurred vision , slurred speech and speaking like Yoda with my words coming out in the wrong order. My neurologist referred me for another brain mri which is scheduled for Wednesday to compare with one last year when my initial diagnosis was MS....It has been an interesting 18 months!

  • That sounds very similar to what happens to me when I drop below 3.5. I've been on an increased dose of Coumadin for three days now, and I haven't seen any symptom improvement. It is all very frustrating!

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