Inr low for 3 weeks--below 2.0 - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Inr low for 3 weeks--below 2.0


Started Warfarin in March and have a target range of 2-3 and have APS. I was doing well for several weeks then fell below 2.0 for two weeks then in range again for 5 weeks and now for last two weeks with 3 venous blood draws, have been 1.7 -dose increased 42 to 43 mg per week then reading 1.8 and dose increaseed to 45.5 mgs or 6-1/2 mg per day and today 1.6 and increased to 7 mg per day. When it was steady I was just eating a couple of pieces of broccoli and a couple of cauliflower then started a very small amount of lettuce instead. I'll try the broccoli again but otherwise have been so very careful to keep general vit k levels steady. I'm new at this but find it very upsetting. Haven't introduced any new meds but started exercising a bit more.

I really get frightened that I'll have another stroke if it gets too low.

I live in New York City in the U.S.

14 Replies

Morning, I think being a bit dehydrated can cause this to be a problem but everyone is different.

Would you be able to discuss your concerns with whoever Prescribes your Warfarin.

Hope you get the answers you need.

Lure2 in reply to daisyd

That is why it is important to have an APS-doctor that understands that i is very important to be at least at 3.0 in INR when we have this illness.

We have spoken a lot of this. You can buy a selftesting machine. It is mostly broccoli and brusselsprouts that make the big change.

For instance yesterday I had too high INR. I eat 9 brusselsprouts and a tiny broccoli piece.I reduced my Inr from 4.4 - 3.4 in 24 hours. How much you must eat of K-vit that is individual. I never change my tablets. I stay at 5 mg each day.

Try to get an APS-doctor. I understand you also take Plaquenil together with warfarin. I do not know how that work. Was it plaquenil or Heparin? Difficult to remember also I have this APS.


loretta1106 in reply to Lure2

I'm on Plaquenil and Warfarin. The only change I've made in diet is little amounts of lettuce. When I was even eating tiny amounts of avocado, my INR dropped. I'm going to try to eliminate lettuce altogether and go back to my small amounts of cauliflower and broccoli daily and see if that helps. I've added some weight lifting (like 3 and 5 pounds exercising at home a couple of times a week). Don't know if that made a difference. APS doctors are rare here. My rheumatologist is the only MD who is really familiar with APS and she does not see me that often (next appt in Sept) and it's frustrating. I'll have to keep looking for a MD who is familiar with APS. Don't want to travel so far because now it's summer but we had a rough winter and now am being testing weekly at an office close to home--

loretta1106 in reply to daisyd

It is very hot here and I am not drinking as much water as I should. I will try drinking more now. Thank you.


Hi you are among many who have problems with this from time to time, do check in with your specialist to see what they say, are you being looked after by somebody with a working knowledge of Hughes Syndrome/APS? MaryF

loretta1106 in reply to MaryF

The one good thing is that the doctor I'm seeing is located in New York Presbyterian Hospital which is one of the best hospitals in the country. Is she familiar with APS--yes--is she very familiar with it--I doubt it.

A target of 2-3 is quite low in the first place - mine is set as 3-3.5 and if I go below 3.4 really I feel the difference and below 3 I start to feel unwell. It is very individual but 3 appears to be a bit of a magic number for a lot of people. With regard to the up and down INR, I have been on warfarin since Jan 2013 (had stroke in Aug 2012 and it took until then to find out that APS was the cause). During the year and a half I have been on it, I have NEVER been stable and within range, I've been stable and out of range though! My Rheumatologist considers this to be one of the signs/symptoms (never sure which is a sign or which a symptom) of the condition ie it is extremely difficult to be stable. What this means for me is near weekly blood tests, sometimes going to fortnightly if I have readings that are near to each other for two weeks in a row. I have gone from 5.5 to 1.6 in a week - only dropping dose to 5mg for one day at the instruction of the Warfarin Clinic as they didn't like it that high, then staying on the usual dose. Due to this inbuilt variability I don't stress about it going up and down as for me I know my diet is fairly stable in terms of vit K and INR still all over the place. There are veg and fruit in mid range in terms of vit K - why don't you just go for those if you think it is having an impact - broccoli is not that great anyway. By the way if my INR goes below 2, I have a standing prescription for Heparin which I inject myself with until the INR goes back about 2. The Rhuematologist is quite clear that below 2 you really are not anit-coagulated effectively at all. Some people have this for if they go below 3 even. You might want to just discuss this with your medical team?

Good luck getting to grips with the uncertainty - having a reason for the stroke does help, then it is just a case of getting to know your condition well enough that you can guide Doctors if they don't - or find one who does!!

Thank you so much. The support here in this forum is huge for me. I don't know what I'd do without it. I have to ask my doctor today what happens if the INR continues to drop. I absolutely agree that I have to continue to seek someone who really knows that a low INR something that has to be watched carefully.

Lure2 in reply to loretta1106

You have to have a doctor that at least has read about APS and understand that we have thick blood and need a higher INR than other people Are you diagnosed SLE also?

Perhaps Plaquenil reacts with Warfarin in some way. I do not know. What is important is that you do not change the tablets at the same time as you change your diet. One thing at a time.

I can tell you that I know a Swedish lady that took a trip to London to see prof Hughes twice.

I'm definitely thinking that I would love to see Dr. Hughes. My md has concentrated on raising my Warfarin as my INR goes down and that seems to be the trend here in the US.

I have found that, particularly in our blazing hot, humid summers, that drinking enough water is a key. I follow a doctor's suggestion from decades ago -- long before my APS symptoms began --of "drinking by the clock." 2 glasses of water with or by breakfast; 2 with or by lunch, 2 with or by dinner -- and 1 extra glass of powerade if i'm outside sweating a lot for each hour of activity ( more if thirst tells me to drink more.) I rarely drink anything other then water (though I suppose I should count hot tea and coffee.) But if I sweat a lot and don't drink the powerade, I get dizzy and weak. And, if I violate these rules for more then a day my INR will go down.

That is an awesome and excellent suggestion. After reading first post, I poured myself a glass of water and am on my 2nd glass. I'll definitely do at least 6 glasses and my daughter always suggested to me that in very hot weather I should drink gatorade--same as powerade and and mix with water and keep drinking--good reminder. Thank you so much. I don't count coffee either as water and I don't think we should.

Hi Loretta. Exercise can certainly change your INR, or it does mine at least. I too have been using weights to strengthen both my legs which are very weak. I am also swimming every day and doing recommended exercises in the pool. I am also on a weight loss programme due to taking high levels of steriods for over a year. But that doesn't mean you should exclude these things from your daily routine. You just need to compensate for them. I am sure your warfarin clinic will be able to advise you about this. If not why not try asking your specialist at your next scheduled visit? I know it can be worrying when your range jumps about all over the place. Try not to get too stressed out about it all because unfortunately this can contribute to a variable INR too. I too drink plenty of water to keep hydrated. I use the alarm on my mobile and it goes off every two hours to help remind me to drink a glass of water. Otherwise I am quite likely to forget!!!! I think we each find our own ways of handling our INRs and I am sure that you will too. xxx

Thank you so much. I have definitely started drinking more water and that's good. They've raised my Warfarin to 7 mg a day which is more than I've ever taken. I'm sure eventually I will get less stressed about the fluctuations in the levels. Have a great day.

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