Advice

[mully]

Hi wonder if anyone can offer any advice I was prescribed warfarin (life long) by Proff D'cruz and prophylactic Heparin if INR falls below 2.5 I self test However new GP doesn't want me to take anymore than 5 to 6mg of warfarin (which makes absolutely no sense to me as I adjust the dose dependent on my INR) also refuses to prescribe Heparin My GP said this was on the advice of the local haematology department when I inquired who gave this advice, It was the nurse from the DVT clinic who had previously asked me to spell antiphospholipid syndrome as she had never heard of it Now the latest advice given to my GP to control my fluctuating INR is to take a very high level of warfarin and take a small amount of prophylactic vitamin K Has anyone heard of this? or to take me off warfarin altogether and use one of the newer anticoagulants I take high dose warfarin to protect my nervous system I have a demyelinating disease cause by an underlying vascular disorder Has anyone heard of the vitamin K treatment for fluctuating INR ?Thanks

[Star13]

I’d go back to GP and tell them you want to be referred back to St T for anticoagulation advise as your not prepared to take advise from a nurse who knows nothing about my disease! Once St T writes advice to your Gp on how you are to be managed it will be difficult for the GP to go against it.This is what makes me so cross about all these discharges from Guys who just send people back to hapless GPS and local clinics who don’t have a clue. When they end up ruining peoples health all that will happen is that Guys will get them back! Such short sighted policies. They could at least discharge with a management program.

[mully in reply to Star13]

Thank you for your reply I have a telephone appointment with Proff D'cruz in March I really want to make the most of my appointment and so much health wise has happened since I last saw him I don't know where to start don't want to waste any of my appointment so I am feeling anxious not to mention that my brain is fried with all the drugs I've been told I have established white matter disease with no explanation of what this is or why is it permanent or temporary is it treatable ? I would be interested to know if anyone else has this and how they're getting on Thanks Mully

[Star13 in reply to mully]

I suggest you write yourself a list between now and then to remind yourself of the things you want to discuss. Don’t forget to ask him to write a management plan for your warfarin in the letter to your GP.

[HollyHeski Administrator in reply to mully]

Good advice from Star13, start writing a bullet point list of symptoms, questions and now this new anticoagerant problem.Try and stay calm, easier said than done but being anxious will fog the brain more.

Even though its a telephone appointment, is there someone that can sit in with you? That way they can help you keep all on track.

[Ray46]

Believe it or not vitamin K is used in some cases to help manage fluctuating INR, couple of good theoretical reasons for it to work - (1) if you add a constant base load of K to a natural fluctuation then the percentage fluctuation is less, may make INR management easier, and (2) higher dose means finer control is easier without getting into cutting tablets or alternating doses. I think I recall also seeing actual papers / trials on this, so there is proper evidence for it as well (not sure it's in BHS or NICE guidelines).

That said, however, the important things are whether it works with APS (I'm not sure) and whether it is a good thing to try for your particular case. To be honest, it doesn't sound like your current primary care doctors would know on either of those things.

If you are self-testing (presumably finger-prick), then if your antibody levels are fluctuating that can directly, and significantly, affect your INR reading, but it won't be your actual INR it's just an inaccuracy in the reading - you won't know the difference without a vein sample for comparison (and many/most self-testers have had very much reduced comparison samples due to covid risk, I know I did when shielding). Dare I ask if your GP / AC nurse actually know about doing venous comparisons in APS patients... ?

Finally, refusing to prescribe the heparin as your specialist has instructed is out of order and may well merit a complaint (there is a chance it is cost driven decision rather than clinical), and refusing to go over 5-6mg is outright bizarre, many people need way more than that, heck, I'm relatively stable and currently need at least 5.5 to maintain 2-3 INR.

[mully in reply to Ray46]

Hi Ray thank you for your reply I too read the papers re using vitamin K It was quite a small trial I think involving 400 people the criteria for eligibility to participate was no underlying immune disease which of course I do have with central nervous inflammation It was explained to me at ST Thomas's that my fluctuating INR was directly related to inflammation When my inflammatory markers are very high my INR decreases so the answer was to get my immune system under control We have no specialist in Antiphospholipid syndrome in the county I have absolutely no faith in the hospitals ability to manage the situation The hospital had been in special measures for five years and was rated the worst in the country They came out of special measures just under a year ago but to be honest I don't think it will be long before they mess up again

[KellyInTexas Administrator in reply to mully]

Ray has summed up quite nicely what I was about to write, although I was unaware of papers .

My Hematologist(s) just tell me to keep a steady level of K in diet at all times to help the inr remain as stable as it can be.

Other than that… I’m out of words. Only horrific emotions which help zero.

Listen to Holly’s wise words as she knows your system.

[GinaD]

I have no idea why, but my INR is most stable when I take warfarin in varying doses --not big variance, just tiny variance -as in 1mg higher twice a week. After 22 years on warfarin I know my INR is stable when I eat 2-4 servings of high K foods daily and have fluctuating warfarin levels. I dont know why, but some hematologists acknowledge that some patients are most stable on fluctuating dosage. Hope you find a doctor who understands APS.

[MaryF Administrator]

I would wish to go back to the original prescriber with the correct knowledge as there appears to be a gap here. It appears to be happening an awful lot, with gaps in GP knowledge, due to lack of training in this area. If you can't email direct, do email the PA, addressed to them, marked urgent in the hopes you get some help. I see you have an appointment coming up, do the email, in short bullet points for medical history and also symptoms and why you were put on Warfarin at that dose, let us know how it goes. MaryF

[KellyInTexas Administrator in reply to MaryF]

Wise.

[daisyd]

I wouldn’t wait until march, I would send an email to prof D’cruz explaining about what your Doctor has said

Good luck

I would also change your Doctor

[mully]

Thank you all for your advice I plan to keep testing at home and adjusting warfarin levels accordingly and do the best I can to keep it in range (at least I have the warfarin now)I just have to hang on until March I will make sure my husband is with me and put the call on speaker phone MRI in 2 weeks of brain and spine Thank you all for your support I don't know how I would have got through the last year without you