Warfarin - managing daily dose has be... - Hughes Syndrome -...

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Warfarin - managing daily dose has become challenging

JPMcGee75 profile image

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

14 Replies

Has your weight changed at all-ie gone down so you need less mg/kg of Warfarin?

JPMcGee75 profile image
JPMcGee75 in reply to Ozchick

Its around the same no major change up or down

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? )

JPMcGee75 profile image
JPMcGee75 in reply to GinaD

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

MaryF profile image
MaryFAdministrator in reply to JPMcGee75

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

JPMcGee75 profile image
JPMcGee75 in reply to MaryF

Thanks Mary - I'll look into this Regards Derek

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.

JPMcGee75 profile image
JPMcGee75 in reply to hihannula

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

Apples2000 profile image
Apples2000 in reply to hihannula

My doctor confirmed stress will mess with your INR.

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

JPMcGee75 profile image
JPMcGee75 in reply to daisyd

Thanks for this, sounds very similar to my experiences. Speaking with Haematologist next week about this.

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

JPMcGee75 profile image
JPMcGee75 in reply to daisyd

Already done the cross checking of my meter with hospital, was OK. Good idea, ask your question of Professor Hughes wouldn't hurt to raise it

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