Raising INR ??

I know our bodies absorb warfarin differently and that there are many lifestyle factors which will make that even more individual but......... have you had success with any foods or exercise to raise your inr?

My hematologist told me that those patients with lupus anticoagulant may find it difficult to maintain a stable inr - I am now testing positive to LA as well as anti beta 2 ..

When I go too high some green veg vit k brings me back to target. But increasing inr seems impossible. I have been below 2 a lot lately and have been injecting a prophylactic dose of clexane to keep me safer whilst increasing warfarin doses to get a higher inr. I know that clexane works differently and will not affect inr.

This low inr has affected my speech and memory for several months now. I am awaiting an MRI. I saw my rheumatologist yesterday and next week I have my six monthly review at St T's where I am expecting to be discharged.

Thanks

Lynn

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  • Hi Lynn

    I used to do the same as you and inject a prophylactic dose of Fragmin if my INR dropped below 3.3.

    I found that I had to self test and self dose to work out what INR I felt best at and to try to keep it there by adjusting the dose of Warfarin as necessary, taking care to make the adjustments small and to give a couple of days to see how the adjustments affected INR.

    I am now off Warfarin and on a full therapeutic dose of Fragmin, which suits me much better and I have markedly fewer symptoms. I would resist all attempts to put me back on Warfarin.

    Best wishes.

    Dave x

  • Thanks for your help - Dave. I am not allowed to self test (no funding) and go to my GP who use the coagucheck computer dosage programme. I think the prob is that the programme is a sledge hammer approach often reducing or increasing the dose by 2mg each time. So I never get stable - I swing too high then too low. So I am making an appointment to see my GP as I have worked out this morning, by looking over my warfarin records, that I am a lot better if I take a steady 7mg and as you say increase or decrease by half a mg and if way too high have an extra portion of vit k veg. I just hope she agrees to letting me trial 7mg over a few weeks.

    Thanks again.

    Lynn.

  • Hi Lynn

    My view is that Warfarin dose should not be changed by more than 0.5 or 1.0mg at a time, unless there is a sudden, major and unexpected upward or downward movement in INR for which a rational cause cannot be identified.

    Good luck and keep us advised.

    Dave

  • Hi again Lynn,

    I have Lupus Anticoagulant and the other 2 or 3 ones. Yes I had to get a Coaguchequemachine (now we get it for free in Sweden at least around the Stockholm-area). It is a puzzle.

    I do not know your range intervall but mine is 2.5 - 3.5 and i try to get it around 3.5. I am more afraid for a clot than a bleeding. The doctors tend to be more afraid for a bleed than a clot. (Hematologist and Rhematologist).

    We are different in how much of warfarin we need to get and keep a specific INR-nr. I seem to be sensible to warfarin. I go from high to low in 24 hours and I am on 5 mg each day. I very seldom change my tabletintake but as I selftest every second day I can manage my K-vitamin intake rather good. I eat K-vitamin vegetables every day but if the INR is a Little high I eat more broccoli or brusselsprouts (just a Little more)

    If my nurse (specialized on INR) suggests that I change my INR she suggests only max 1/ 2 tablet or just 1/4 tablet.. Then.it takes a couple of days and I eat as usual.(perhaps no K-veg if I have too low INR till I get in range). If I instead change my K-vit intake it goes faster.

    If my INR should drop under 1.8 - 2-0 I take 1.000 Fragmin but I have never been forced to do that. And then as I have it at home I must go into hospital to do it.

    I make notes and if I change drug one day it may not change my INR but if I stay on that drug for several days it will definitely change my INR Up or down I do not know. Depends.

    Hope this could help you and you could understand what I try to say. Come back if you will ask more.

    Best wishes to US (is that where you are ?) from Kerstin in Stockholm

  • Hi Kerstin

    Thanks for replying.

    My target is 2.5 to 3.5

    I am in the UK.

    Thus far I have been denied self testing but I live in hope and will keep trying :)

    Lynn.

  • Yes I know. They have to cheque how far it is between the lab vein test and the machine INR. For me it is a discrepance of 0.9 - 1.0 (with a very slight difference) I did the test home with the machine when it was new and went to the lab vein test several times so we could be sure it ALWAYS was the same difference. Now I go to the lab every 6 - 8 week. My doctors know me and trust I can handle it which I can.

    Hope you can explain this to your doctor. I wish you good luck. Kerstin

  • I agree with Dave not to change your warfarin dose more than 1/2 tablet. You try as I have descrived above. Remember only small Changes each time and wait. Ask for veintest and very often to begin with when you learn how your body reacts. Make notes. Constant intake of food as much as you can. It can be that we with Lupus Anticoagulant are very sensitive to warfarin and react immediately on a small change. Then it will be impossible to handel if you go up and down and change often.

    Good luck. Kerstin

  • Hi Kerstin: This site saves my sanity. My inr target range is 2-3 and it has been fairly stable for awhile but last week it was 1.7 and this week I'm 1.8 and now am on 6.5 mgs of Warfarin a day and will be tested in a week. I'm in the US and self testing is not so easy to get unless I self pay. I like the way you manage your eating by frequent testing. I thought my doctor upping my warfarin by 1/2 mg a day wasn't enough but I guess she knows what she's doing.

  • Hi again Loretta,

    Good to hear from you. I guess you have now an APS-doctor that knows about this illness.

    What is important is how you feel when you are so low in INR as 1.7. Tell the doctor.

    A selftesting machine would save you from worrying about the INR and you could stay at home if it is far to the lab. Think about it.

    A lot of hugs from Kerstin here in Stockholm

  • Good to hear from you too Kerstin. I am so tired when it's low and realize after reading your post that I do have more energy when it's higher. Gina mentions Ginger and Ginger Ale. I thought they lowered the INR. I love Ginger. I'll try it. Thanks everyone.

  • The doctors shall follow your diet. If you Always eat some K-vit vegetables like broccoli every day (as you should do) the doctors must give you more tablets of warfarin. Then if the INR is too low you do not eat so much broccoli.

    I never change my tabletintake. BUT I change my intake of K-vit rich vegetables.

    To get a higher INR you stop eating some broccoli but you can not let your doctor also change the tablets. the same day. That does not work. That makes it a double change. Then you get a too high INR. You must tell your doctor at the lab if you start some new regim that interacts with the warfarin.

    This morning i had a bit high INR. I started the day with a little more broccoli than usual and then I know that in 12 - 24 hours my INR is lower again. I go to the lab only every 8 week now when I selftest. I test the INR every second day at present. I never change the tablets.

    This is the way it should be. The doctor shall follow your diet not the other way round.

    Kerstin

  • Wow Kerstin, I sure wish I could get self testing and will talk to someone about that soon. I asked my insurance company and I don't think they can pay for it. It's ridiculous because my husband had diabetes and Medicare paid for all his supplies. Why shouldn't insurance in the US cover self testing for INR? I just think enough isn't known about it here. What a shame.

  • We're all different and I'm no doctor, but yes, try to have as stable a diet and warfarin doseage as possible. But for those times when you want to raise the INR with food instead of more warfarin --ginger and ginger ale always raises that number for me. Also cranberries.

  • Thanks Gina

  • I just went out and got some ginger tea. Is regular ginger better and how much? Thank you for that information.

  • We're all so different -body weight, metabolism levels, warfarin doseage, usual vitamin K intake --that the degree to which how much ginger or how many cranberries will raise your INR noticibly can not really be applied from person to person. I will eat more ginger slices with sushi, if I happen to be eating at Japanese restaurant, I'll put a handful of dried cranberries on my salad, or I'll purchase this cranberry jello salad my local grocer sells in their deli. But the amount of blood thinning indulgence will depend on the severity of my too-thick-blood symptoms.

    I have taken warfarin for APS for 13 years; so I've had a bit of time to experiment with what works for me. Unfortunately, I'm afraid the specifics of my self medication discoveries are not applicable for other patients. But generally, ginger, cranberries, alcohol all thin the blood rather quickly.

  • We're all so different -body weight, metabolism levels, warfarin doseage, usual vitamin K intake --that the degree to which how much ginger or how many cranberries will raise your INR noticibly can not really be applied from person to person. I will eat more ginger slices with sushi, if I happen to be eating at Japanese restaurant, I'll put a handful of dried cranberries on my salad, or I'll purchase this cranberry jello salad my local grocer sells in their deli. But the amount of blood thinning indulgence will depend on the severity of my too-thick-blood symptoms.

    I have taken warfarin for APS for 13 years; so I've had a bit of time to experiment with what works for me. Unfortunately, I'm afraid the specifics of my self medication discoveries are not applicable for other patients. But generally, ginger, cranberries, alcohol all thin the blood rather quickly.

  • Although I don't self test, I know my INR went up yesterday and it may be from the ginger tea or something else but my gums were bleeding slightly which they haven't been when INR was on the low side. When INR is steady with increased Warfarin dose, I have slight gum bleeding. This is such a strange medication and APS is such a strange syndrome. I've only been on it 4 months. I suppose I will get used to the fluctuations.

  • I have not paid for my Coagucheque-machine. It will keep well for several years. Can you have the strips on prescription? They cost but I have it on prescription here in Stockholm.

    If you buy that machine you must learn to handle it. I was on a course for one day and we got papers about selftesting and food and drugs etc etc.

    Hope you can get it.

    Kerstin

  • I didn't think of that Kerstin--buying the machine then trying to get the supplies on prescription. I have to do some serious research on this.

  • When I was a kid I rarely bled from mosquito bites, scratches, scrapes, etc -- which I took as (obvious logic to an 10 year old tom boy) evidence that I was tougher and more resilient then my play mates.

    But then, at age 45 I was diagnosed and put on warfarin. The headaches and the "funny turns" disappeared, but for the first time in my life I had to learn not to scratch mosquito bites (or they will bleed) and carry bandages with me when I hike (if I scrape my leg, it will bleed;) to take more care when flossing my teeth, ( or my gums will bleed;) and follow the dentist's advice and switch from a stiff bristle toothbrush to a soft bristle one, (also gum bleeding.) Everybody else probably learned these lessons when they were kids -- but not me.

    I was bleeding easier, but it did not seem to me that my bleeding was excessive compared to -- my husband, my dentist's other patients, other trail club hikers -- but this bleeding when scratched by a thorn or having difficulty useing a super strong bristle tooth brush was new to me. ("Gina! Of course you're bleeding from that thorn scratch! Look how deep and long that scratch is! Of course we'll wait while you get out the band aids.") (And from the dentist: "Of course your gums bleed. I've been telling you for years that though the stifff bristles may scrab plaque better, they are too hard on your gums. Switch to a soft bristle briush.")

    Of course, what part of this recent propensity to bleed is due to warfarin and having, finally(!) "normal" blood and what is due to aging skin and gums which becomes thinner with time - is anyone's guess.

    But I thought I'd share this as your comments about bleeding gums resonated with me.

  • When my inr is too low, my gums don't bleed and when they bleed (despite careful flossing and soft toothbrush) I know my INR is in range.

    I also travel with bandages and apply pressure. That slows and eventually stops the bleeding.

  • My gums never bleed and have never done not even before warfarin I should perhaps be on a higher INR. I am on 3.5 - 4.0 at present and i am not allowed to go so high as 4.0. I ate some more broccoli tonight to be back on 3.5.

    I have never noticed any difference in bleeding with or without warfarin. How about that?!

    Kerstin

  • I'm so new to Warfarin that I really don't know. Maybe I'm just susceptible to Warfarin's effects. After I had my stroke and they injected an anticoagulant into my belly, my gums bled quite a bit. Who knows. My target range is 2-3 and when I'm 2.3-2.4, I have some bleeding when I floss.

  • 2.3 - 2.4 is a ver low INR. For most of us with APS is it quite too low. Have you not felt any change when you INR is around 3.0 that you feel much better in thinking and dizziness etc etc?

    My hematolog is afraid that i go too high. She is asking if I have had some bleeding. I have never had that, not ewen when I brush my teeth.

    Do not worry about that but try to get a stable INR around at least 2.8 - 3-0 in INR and see if you feel better-

    Kerstin

  • My highest, only once, was 3.4 but before that and since the highest has been 2.4. I don't know how to get it higher. I do feel more energetic and better all around when it's higher.

  • You must tell you APS-doctor that you want the INR higher. He can then tell the nurse that your INR must be at a higher range. Only an APS-doctor understands that we need much higher INR as our blood is exstremely sticky.

    They give you a little more warfarin every day. Then the INR will be higher.

    Mine is 2.5 - 3.5. but as I selftest I am mostly at 3.5 as I have noticed I feel better on 3.5.

    Hope you have an APS-doctor now.

    Kerstin

  • The problem here in the US is that I have a rheumatologist who is very knowledgeable about lupus and APS and doesn't monitor my INR then an internist who does monitor my INR who follows the neurologist's instructions that the INR should be between 2-3, however, I'm going to take your advice and talk to her when I have my venous blood draw on Monday and ask that I stay on a higher dose of Warfarin and try to get my INR up closer to 3 rather than around 2. Whew! Just have to be assertive.

  • You shall talk to your Rheumatologist who understands this illness and perhaps is your APS-doctor. Only an APS-doctor can understand that we need an INR higher than 2.0 - 3.0. It must be at least 2.5 - 3.5 (I have that but i selftest and can decide what number i shall aim for).

    Tell her this and that you do not feel well. I am sure she will understand and then she tells the neurologist and internist to follow that instruction. Aim for 3.0 and try to stay on it. I think you will feel much better on that INR.

    This is very important. Good luck!

  • The last time I saw my rheumatologist, I mentioned to her that APS patients I spoke with said that they felt better with their INR over 3 and she said that she's not sure she agrees with that. I'm definitely going to talk to my internist on Monday. I sincerely hope that my INR goes up with Mondays test. Be well.

  • Perhaps she is not an APS-doctor on the map. There are very few of them. But did you tell her that you were not feeling well?

    Good luck from Kerstin

  • Unfortunately Kerstin, there are very few APS doctors here. As a matter of fact, I was surprised that the doctors I see, know about APS at all as my former ones didn't.

  • What raises mine? a couple days of a couple glasses of wine. Not to be recommended. lol

    Or like Gina brought up, maybe it was ginger too. I have to check that out... I eat a ton of it with my sushi.

  • Thanks :)

  • Are you living in California? I'm in the US-New York--and have been looking for people here who may have had success getting self testing equipment through their insurance companies.

  • Another reading yesterday and I now have my lowest INR ever - 1.6

    Am on 7.5mg warfarin and 40mg clexane.

    Have appointment at St T's on Tuesday.

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