Newbie

[Ditsy-Kirsty]

Hi I'm a newbie here.

At the moment the doctors are struggling to get my Warfarin dosage correct. I have been on Warfarin since December 2015.

Has anyone else on Warfarin struggled with this problem?

[MaryF Administrator]

HI there, where are you located? Several of our members have had problems, some find being meticulous with their diet helps to stabilise things, others have to try an alternative anticoagulant. MaryF

[Ditsy-Kirsty in reply to MaryF]

Hi, I'm from Deganwy, North Wales.

It has been regulated for a few months until I went to Disneyland Paris in August.

[MaryF Administrator in reply to Ditsy-Kirsty]

I do hope they get to the bottom of it for you, let us know how it goes. MaryF

[michey23]

My rheumatologist is reluctant to put me on warfarin. I'm struggling with my symptoms as well as my hashimotos feel really terrible😣 does warfarin really help the symptoms of APS? Also does anybody know of a diet that could help? Sorry for butting in.

[Ditsy-Kirsty in reply to michey23]

All I know is that I was diagnosed with Antiphospholipid Syndrome and the Haematologist wanted me to go on warfarin.

[Lure2 in reply to michey23]

I can tell you after 5 years selftesting on Warfarin that it do help especially if you have Primary APS (no other autoimmun illnesses together with APS).

Read "Sticky Blood Explained" by Kay Thackray. She has APS and it is a good book to understand symtoms and how it is to live with it. She has got Warfarin and like me she thought it was a miracle when Warfarin helped the symptoms.

Best wishes from Kerstin in Stockholm

[Wittycjt in reply to michey23]

See eating on warfarin book out

[Lure2 in reply to Wittycjt]

Hi Wittycjt,

As we with APS need a higher INR and have more difficulties to keep it stable, I think it could be difficult to rely on a book written to everyone. Or is it written especially for people with APS?

Have you read it? Do they tell people to avoid the greens?

Kerstin

[Wittycjt in reply to Wittycjt]

The book is by Cath Atkin" Eat on Warfarin"

[HollyHeski Administrator]

Hi, I struggled for many months, either too high or too low, this was 8 yrs ago, tried everything inc. Diaticians! I was put on daily clexane injections since & never looked back. Good anticoalagent is the key to feeling better with APS. There are alternatives to warfarin, talk to your aps specialist. Your doing the right thing by keep trying x

[Lure2]

I have all the three antibodies in high titres since 14 years and as I have Lupus Anticoagulant (one of the three antibodies they test) it can be difficult to keep the INR-level steady.

First of all you must be on a rather high level of your INR. I have an INR between 3.2 - 3.8 and feel best at 3.8. If the INR is too low it does not work with Warfarin.

I selftest since 4 years every second day at home. CONSTANCY in what you eat is important.

Warfarin is a very good drug for us with APS but there are other alternatives also of course.

Best wishes from Kerstin in Stockholm

[Manofmendip]

Hi Kirsty and welcome.

Just a quick question, do you have a diagnosis of APS/Hughes Syndrome or are you on Warfarin for another condition.

I certainly could only keep my INR in the right range by self testing. I'm now on Fragmin injections so INR is not relevant to me any more.

Best wishes.

Dave

[Hidden]

This coming November I will have on Warfarin for 3 years. Positive for B2GP + ACL and transient positive LA and prothrombin gene mutation, with 1 unprovoked VTE/PE...it is a constant challenge to maintain INR in therapeutic range of 2.0-3.0....consistent diet, consistent exercise seems to be required....minimizing stress, getting proper sleep.....all seem to help but still have some variation ...keep at it.

[Budleigh]

Hi newbie .. I two have problems with my warfarin levels for many years now ..?I got private funding for a trial on rivaroxban which did not work ..so I was but on high doses of Clexane injections twice a day..why they were working out there new plain of attack.. I ended up in hospital with pe on both of my lungs..were they found out my I.n. r was 0.5 so I was but on a heparin infusion drip for 108 hours which only got my I.n.r. level up to 1.1. so that did not work .so I was sent home and referred to Professor Beverly Hunt at Guy's and StThomas Hospital were she carried out a lot of test and I was told to carry on with my Clexane injections to I see her next....but I ended back up in hospital were I have been for 4weeks now.. with I am having more test as I have lost all movement in my right leg and my bladder has stopped working also..?so more text but they can't sort my I.n. r. so I was put on fondaparinux injections of 7.5mg twice a day....I will let you know the outcome of my drugs they are starting to try today I wish you all the best

[jetjetjet]

I have never been stable in the 7 years i have been on them -

I have found out that keeping your meds consistent , with even the manufacturers and the inert ingredients not just the active ingredients is big with me .

i have a lot of medical problems and i"m on many meds for them BUT a change in the Manufacture can and has cause INR bounce .

and diet of course is big -- I don't eat much of anything with Vit. K , I get it thru my vitamins and instant breakfast of which i have the same amount every day as we do need Vit. K in our diet .

This is me and what I do we all can be very different ..

any questions i am here C & J

[Wittycjt]

I decide what meal I will have my veggies usually either lunch OR dinner. Then I eat same amt of vit k each day.

Usually breakfast, is cereal-grains which are low in vit.

Meats are usually low too, potatoes I find can be tricky but rice is low in mcg, so you could have that instead of potatoes.

Be consistent every day with micrograms of your vitamin k! This should help. Let us know. Best of success...

[Wittycjt]

PS mayonaise can be a bummer, as well as, other oily things. Corn oil is not supper high but olive oil can be. Be careful, if yunsure "Google" for an answer or go to INRTracker or PTINR.com

[Tofino5]

Hi Newbie,

I've been on 'brand-generic' warfarin for a little over 10 years, and my INRs are very inconsistent. Brand-generic means the binders and fillers are consistent with the drug, they do not change as they would with other generics. I find my body is sensitive to the changes.

My hematologist put me on 100 mcg/day of Vit K supplement about a year ago, saying it sometimes helped stabilize things, but it hasn't helped.

I micro-manage manage my Vit K food intake, aiming for 120 mcg of K per day. I have an app on my phone to check Vit K content of foods when I'm out, and a big ole print out at home. I vary the foods.

I think we're all just different and our bodies react differently to the medicine. Self-testing didn't work for me, so I have labs every couple of weeks.

You aren't alone. Just keep trying to find answers and be good to yourself - be consistent in your Vit K intake, eat healthy foods, drink plenty of water, try to get a good amount of sleep each night, and manage any stress in your life.

Anita