Diagnosed with APS some 9 years ago, put on Warfarin and self test with target INR 3.0 to 4.0 (ideally 3.5). Have been on 8mg / 9mg daily until earlier this year then had to reduce to 7mg / 8mg to prevent going over 4.0. Warfarin Clinic did test my blood and checked my meter against theirs meter, all OK. However, have now had to reduce further to 6mg/7mg to keep my INR around the 3.6 mark.
Has anyone experienced anything like this?
My lifestyle hasn't changed that much over the years and doing everything basically the same. The only difference being the Astra Zeneca shots earlier this year in January and April. Don't think this has had any effect, maybe its a reaction for being on Warfarin for such along time. Be grateful to hear if anyone else has had similar experience and if so any idea as to the cause
Have a Consultants telephone appointment later this month and will ask the question, but though I'd raise it here in case anyone else has had a similar experience.
Regards
Derek
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JPMcGee75
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When I first started warfarin, 20 years ago, I had some ( not as much as you) difficulty staying in range. I took the advice of my hematologist and kept an OCD type journal and found 2things that helped : 1, sunlight exposure thinned my blood a bit, and 2, that abstaining from all leafy greens (which was a usual protocol back then) actually made my INR less stable. Today I eat 2-3 servings of high K content veggies a day, and surprisingly, that has kept my warfarin more likely to be in range. Disclaimer: all my APS tests have been negative since I went gluten free, and I am symptom free with an INR as low as 1.6. I've gone from triple positive to triple negative. The one food I do abstain from is liver, which has a sky high K content. -- (I like liver. Now that I have been triple negative for 16 years maybe I can go back to liver and onions? )
OCD Journal sound a good idea as I keep a diary and this expanded will probably do the job. I'm also rather partial to Liver & Onions but have had to forgo like yourself. Thanks for the advice. Keep safe Derek
Obviously as well as having a detailed chat with your consultant to see how they can help you, the book Cath Atkin, Eat on Warfarin, (she has APS herself), is found to be very useful by people on Warfarin, might be worth a peek at that. MaryF
I’d be overjoyed if my dosages had to be reduced. Less is best, if you are within your range! My dosages lately keep going up, and I’ve been stable for a very long time, The only difference is I’ve been going through max stress lately! I think stress affects INR.
Hi - agree less is best and as long as my consultant is happy so will I be. If the stress theory is applicable then I must be getting more chilled, though don't feel that's the case. Anyway thanks for your response, keep safe. Regards Derek
Hi, It’s interesting this has changed since you’ve had the vaccine. I’ve been told categorically by different health professionals (including the immunology clinic) that anyone with APS shouldn’t have the AZ vaccine due to the clotting risk. It seems to have the opposite effect in you tho! I’m not an antivaxxer at all but I am cautious with it after having anaphylaxis to the Pfizer vaccine plus several severe infections in the 3 months post vaccine. My INR levels have been completely unstable since then and it’s increased from 10’s per day to 15’s. I can’t seem to go more than 2 weeks without dropping out of range (3-4). My bloods Friday were 2.2 and this morning have only increased to 2.4 despite taking booster doses since Friday. Does anyone else experience this?
Mine is the same always my dose is always about 7mgs / 6.5
It used to be regularly 8/9 that’s to keep my inr around 3.5 , I have not done anything different, my coaguchex machine no longer tests me correctly, had it checked all good having to have blood tests at doctors now
I had the phyzia vaccine wrong spelling I know no problems i have been wondering if that has altered anything
Would be interested to know how you get on, I sent an email to st Thomas’s who said the same as the local hospital, will need to have Venus checks instead of coaguchex, if not matching, I usually test x3 a week but now once a week, I don’t like not being independent, hoping it’s going to improve. Professor Hughes is doing his question and answer thing tomorrow, was wondering if it would be a question he could answer
Hello DerekMy problem is the same as you and I think my change of warfarin dosage could be because of my Astra Zeneca vaccine.
My inr has been as high as 7.4,confirmed on surgery’s own coaguchek machine. Over 60% of my inr readings since having my2nd dose in May have been over 4 (range 3-4). I have gone from having 8-9 mg down to 7mg to try and keep it in range.
I have been on warfarin for over 20 years and reasonably stable. The only recent thing I can put the changes in inr down to is the vaccine.
Out of interest, have you had a booster yet? If so, which one did you have? Mine is due in November.
I tend to agree that it may be down to the Astra Zeneca (my 1st & 2nd dose) as my INR went erratic but has now returned to normal and behaving itself some six months on . I did mention this to my Haematologist and warfarin nurse, they have recommended anyone who has had these vaccines and had similar experiences / irregularities should test weekly until it returns to normal and to contact them if in doubt. So not they're not saying it is a problem but to monitor it (just in case).
Had my booster on 25/011/2021, some 25 weeks after my 2nd Astra Zeneca dose, but this time I was given the Pizer vaccine and have self tested every day since and INR has remained stable to date
So that's how its gone with me, hope yours settles down
That’s good news that things are settling down with you. Are you still taking a lower dose of warfarin or are you back to the amount you were taking pre vaccine?
I’m glad to hear you have remained stable on the Pfizer booster. Thanks for the update.
I have been on warfarin for 27 years now. Always the same dose, always in range albeit a little 'blip' here & there if I had taken different meds/eaten more/less greens etc...I always knew why it blipped as there was a reason. The past few years my INR & dosage is crazy, despite everything else being exactly the same in regards to meds, diet, weight, anything you can think of. Spoke to my haemo, who said that there's no reason for me to be concerned, it's just the way things go; the way he explained it to me was that as we age, just as our body changes, so does how our body processes certain things. In regards to the AZ covid jab, I also had it, but my INR had been wobbly for a few years before that, so in my case, I can rule that out completely. I DID have problems with my INR going extremely low after the AZ jab, but luckily Haemo monitored my INR when I had my second jab so it behaved. Mine is generally done by fingerprick (haemo hates these machines as he believes they aren't as accurate, which I would tend to agree with as it's evident when I have my pairing test done every 7 weeks) and it's recommended that for every 7 or 8 fingerprick tests you have, you should also have a venous one done too, to compare results. Also, if my INR goes below or above a certain level, I have a venous one done too.
I have only been on Warfarin 10 years (from Sweden, selftesting, tripple positive with high titres). I wonder if you have a CoaguChek XS machine?
Do you find big differences between the vein and the fingerprick values and I also wonder that when you are too low in therapeutic value if you can take a Fragminshot or something to prevent clotting?
Hiya. I don't self check, I can't afford to pay for the machine. My INR is done via the coag machines at the GP surgery. I have noticed as much of a difference of 1.0 in INR between the finger prick & the vein (both done at the same time) which I think you'll agree is a pretty big difference! I use Clexane (Fragmin) if my INR drops below 2.5 (on the advice of my haemo)to bridge the gap until the warfarin takes effect.
Do the GP-surgery use the CoaguChek machine and I wonder what therapeutic value you are put on from your Hematologist who I hope is a Specialist of APS (very few doctors are)? How often do you go for a fingerprick value?
It is only the veinvalue who is the value you can always trust. A difference between the fingerprick and the veinvalue of 1.0 is of course a too big difference. What does your Hematologist say about that difference? Does she or he thinks it is ok?
Are you positive to one or two or three antibodies incl Lupus Anticoagulant?
I have a therapeutic level of INR 3.5 - 4.0 and if I go under an INR of 3.5 I take a Fragmin shot at once. I selftest very often and now know there is only a very small difference between the two values. Therefor I only go to the hospital lab every two or three month at present.
Fors some of us, somewhat caused by the different severe symptoms we have, there is very important that we keep our INR in range all the time to avoid microclots and embolies for example.
I do not use the CoaguChek XS machine anymore as it did not give a correct difference to the veinvalue.
The surgery use the Coag machine. I generally have my INR done every week (fortnightly if it's behaving, can't go any longer than that as my INR seems to have a habit of suddenly playing silly buggers). My target in 3.5 but my TL is 3-4. If it drops below 2.5, I then bridge with clexane. Haemo is of the belief that no matter how good a Coag machine is, there will always be a difference between that result & a venous test. If my INR goes above 4, I have to have a venous test regardless of when the last pairing test was.
If it helps, I've been self testing for quite a few years now in conjunction with the Warfarin nurses at our local hospital and overseen by my haematologist. My Coaguchek results are regularly cross referenced against actual venous tests that are taken on periodic visits to the hospital and I self test prior to each visit This started initially on a weekly basis then moved to monthly and now is on a three monthly cycle. The latest result when I self tested last Monday morning at 7:30 am at home provided an INR reading of 3.3, then had a follow up venous test at the hospital later that morning at 11:00 a.m. which provided a reading of 3.4. My target range is 3.0 to 4.0 and I also have Clexane (Fragmin) should my INR drop below 2.5 but have never needed to use it. Reason being that by self self testing I can increase or decrease my Warfarin balanced against diet, conditions etc to remain in range. So guess it works for me.
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