I have got to prove that I am having an INR test and my INR numbers ....to get a Warfarin prescription?! Anyone else been asked for proof?!

I went to my GP today...

While putting in my repeat prescription for warfarin the lovely receptionist says that she would be unable to fill prescription until I proved I needed it. I have to produce a  yellow book (to my knowledge they do not use yellow books any longer) infavour of a letter which you give in to the clinic each time you go to test your Inr... I also need Proof of my INR numbers. 

I pointed out that the GP was able to see all of this information on her system. As she had shown me just a few weeks ago. there own files have letters from specialists and anticoagulation clinics.

Luckily, I did have my old yellow book from last year. I also had a  letter from a few weeks back that I'd mislaid. It had every thing on it INR target INR result Warfarin dose diagnoses Antiphospholipid Syndrome and all the anticoagulation clinics references and contact details.

This apparently was still not good enough as it was not this week's Which I had actually just come back from unfortunately as the ruddy machines were down again I had to have blood taken so no letter to prove my test today.

I asked who was requesting such information no one new.... And why were they asking for this information again no response. I asked if warfarin was being used on the streets as some form of illegal high but still no answers.

Has anyone else found this as I found it most intrusive and strange that my GP and her receptionist have suddenly taken an interest in any of this testing 

I finally asked the receptionist if she actually wanted blood as anything I'd provided just wasn't enough for her.

Without such proof do we just go with out Warfarin......?!

70 Replies

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  • Yes this is normal for me. Only been on warfarin for 2 months but have to give my yellow book to the pharmacist each time I go X 

  • May I ask where you are...?! As yellow books are not used locally to me anymore is it a postcode thing (I do wish they were as I have to write my results in a calender Now) my calendar wouldn't be enough for that GP receptionist either lol

    I was wondering if this was a new thing, doing this has not been asked of me previously for the last year.

    may I ask if you have your Inr taken at a hospital / clinic / GP or self test?! 

    Thanks for your response ;)

  • Hi 

    Yes I'm in Cheshire. I test at my Drs surgery and get my prescriptions from there as well. It's still all new to me and I just assumed this was normal for everyone. I take my yellow book everywhere as well! The book seems better than a calendar!! 

    Kelly X 

  • Your lucky to have such a Gp...I might try and bring back the yellow 📖 book 😀x

  • I have to give the pharmacy a copy of my last INR results when I collect a warfarin prescription. Normally get a piece of paper with results on it through the post after test. Stopped using yellow books about 4-5 years ago. 

  • Thanks for responding 😀

  • Ring up, and get the email address of the secretary to GP and write an email letter addressed to the GP marked urgent, no do not go without it!   This will make the GP tell you what you have to do/procedure wise to use the pharmacy.MaryF

  • Thanks Mary up until now warfarin has been just one of many medications I take on prescription. I just wondered why all the subterfuge about warfarin particularly now.

     As well as the GP I spoke with my MP last night who will be passing on my enquiry to the Secretary of health 

  • This has turned out to be alot harder than you would believe.... I have been asked to fax 📠 my letter or write as they don't give it out as it's personal....I pointed out that this isn't a facility I don't have at home.....

    I asked for the practise managers email and got the same....so then I asked re surgery / practise email surely you have one of those.....?! Apparently they don't..... I am now waiting for permission to be given my Dr's email....they will contact her by text and get back to me..... I am also chasing up the enquiry I made regarding self testing strips and lancets on the NHS as my specialist asked that I self test 3 times a week.  

    Since this started with the first started with the receptionist on Wednesday they actually do have my original yellow book which includes everything they need. They also have the anticoagulation clinic letter again with all relevant information on it.... Baring in mind it was they that did my original referral upon the request of my specialist. They have prescribed all warfarin since then and have access to Inr details via computer They have used that information from that letter to call the anticoagulation clinic directly to get my latest INR I have confirmed my INR result this week's dosing and when my next test will be.  I have recieved all my repeat medications for this month today to the exclusion of my warfarin. I have been put through unnecessary stress just to get a Warfarin prescription. I feel totally aggrieved pointlessly. I have never missed a test since I started last year and feel unjustly got at yet again 

  • My inr and Warfarin are dealt with by a local pharmacy rather than my Gp but there are signs up in the Gp surgery saying you must produce your yellow book when requesting a prescription for warfarin and yes the yellow books are still in use.

  • Thanks for your response which part of the country are you in....your lucky to have such A well equipped pharmacy and have those elusive yellow books 📚 😀

  • I'm in the London borough of Havering and originally had to go to the local hospital for testing but the waiting room is small and loads of people turn up in wheelchairs, they automatically go to the front of the queue due to lack of space so I could be there for hours. They started to offer anyone who was stable the opportunity to visit a pharmacy of their choice from quite a long list. I picked one at random and he's been brilliant. He has a little room for the testing, the results are given straight away and he dispenses the warfarin, he can adjust the dose as necessary using the same computer programme the hospital uses. I can drop in pretty much whenever if I feel it needs checking between appointments, I love this system.

  • What a fabulous pharmacist your very lucky 🍀 

  • Iv only been asked once for my yellow book and we still use ours in Yorkshire I know a lot have stop using them now they are good I take mine with me all the time iv never hide no problem hope you get it sorted x

  • I am given any Warfarin I need at the INR clinic. If I run out I can request more at any pharmacy so long as I produce my yellow booklet. 

  • Again such variation collecting warfarin directly from clinic. Everyone's situation is so different. Again may I ask where you Are?! 

    Why in some areas the yellow book applies and not in others 

    Thanks for your response 

  • Do you get the Warfarin for free in the UK?

  • It depends on eligibility if you are on certain benefits.

  • I have to tell my doctors my latest inr reading and doseage. Once in a blue moon the pharmacy ask to see my yellow book 

  • My GP has not been interested even when I've brought it up....she just used to look at me like I was talking a foreign language 

    Thanks for the insight though 😀

  • I have only been asked to show my yellow book once in 15 years. The somewhat officious pharmacy (shop) assistant who asked for it looked at the book with my results of 4.5 and higher (as I keep it to nearly 5 on advice from my Consultant) and I could see he had no idea what he was looking at, or why. To make it even more ridiculous was the fact that this area had stopped using them months before, plus I do home testing and the book was filled in by me and signed by me.

    I feel sure this is yet another case of the pharmacies trying to make themselves feel more important than they are, a bit like them asking repeatedly for their customers to undertake medication revues with their pharmacists who know absolutely nothing about the diseases for which the medications are used. My Consultant and my GP are more knowledgeable on my illnesses  and how I use my medications than a pharmacist.

  • Brilliant point I'm being asked to organise home testing 3 times a week.....so this is going to put a fly in the ointment if and when that starts 

    So it's the pharmacies and not the GP's requesting this information I think I will ask them when I'm in there next....

    Funny how there is no official protocol it's not like any of us want to be on warfarin for life....

    Your shop assistant obviously shares the same face as my doctors receptionist.... 

    Thanks for your experience and knowledge it's greatly appreciated 

    😀

  • We may be less knowledgeable on the medical conditions but are the specialists in the drugs. Many of UK pharmacists are trained to run warfarin clinics even if it is not a service commissioned in your area. 

    We may also have the condition ourselves but not advertise it at work! I do and I'm a pharmacist.

    However Pharmacy Medication reviews are not about the condition, ( that's the GP or consultants job to review), but how and when you take the medicines and picking up any serious interactions/ potential side effects. The majority of people I do a review with don't even know why they are taking their medicines! Or when to take them for optimum effectiveness. 

    Many "medication use reviews" (MuR) as they are officially called in pharmacy bring up life changing issues which patients have failed to mention to their GP.

    Just so you know - Reducing Polypharmacy is the drive in the NHS this year.MUR 'S are a free annual service provided by pharmacists to their customers.

    We are only trying to ensure that you get the best treatment tailored to your needs. I hope this clarifies the service.

  • Thanks again yissica I am going to ask for an MUR at my local pharmacy. 

    Had to Google polypharmacy though.... Being only 47 i now feel very old 👵 and wish it was only 4 drugs I was taking...... 

    I have and will be taking up that drive myself to reduce and hopefully stop as many of the drugs I'm being prescribed.

    Your input has been very helpful and knowledgeable I just wish you were my pharmacist 😀

  • Pleasure always message me if you need advice. Happy to help.

  • I move around the country a lot (7 moves in the last 10 years) and can tell you that yellow books ( well, yellow automatically printed slips - like a payslip or P45 - that are then posted) are in use in Surrey, Hampshire, Wiltshire and Bristol. Most of those had switched to that system while I was there or had just switched.

    The proof might be for two things:

    1) warfarin is usually a listed drug - I regularly exceed my permitted prescription allowance (based on 'normal' dosages), due to my high dose (12mg per day), so they check your on that dose so you don't have loads of it about, perhaps because;

    2) warfarin is a poison. I'm not sure you could use it for getting high, but all prescription drugs are carefully monitored.

    Or, the pharmacist was empire building. If the Gp has given you the prescription, why is she querying your repeat script? She should ask the Gp if she is concerned as to the levels.

  • Well thats a yellow slip never heard of...and nothing like the yellow books of old lol. So yet another variation through out the country.

    Yes I new that it's a poison (rat 🐀 so I've been told) which did shock me when I first started. I tend not to leave it lying around.

    The getting high comment was purely my bad sense of humour under the circumstances and it doesn't having now taken it....

    You could be onto something re the high dose of us with APS though and the empire building chemists lol

    Thank you for getting back ro me it is appreciated 😀

  • pulsetoday.co.uk/a-safety-c...

    It's not the pharmacy or the gp surgery being officious they are following guidelines for patient safety apparently.

  • Your an absolute star 🌟 well done on finding this 

    My GP is it seems going to have to get more involved whether she likes it or not will ask next week if they have the correct software to enable them to prescribe.....

    Although saying that my doctor 😷 is only prescribing what my specialist and anticoagulation clinic have requested. There are 3 teirs before it gets to the chemist.

    Well done again will have to read it again 😀

  • Just noticed this article is dated 5th April 2007 I need to find something more recent 😀

  • In response to all the posts and as a UK pharmacist the goal posts changed last year. We and your GP are now required to check that you are being monitored regularly by the warfarin clinics as they are run independently in many areas. 

    We are expected to prove that this is being monitored at our annual government visit. The same actually applies to methotrexate prescriptions but this thest is often requested by the GP themselves.

    Neither of us are supposed to prescribe or dispense warfarin without seeing a reading of INR within the last 3 months. 

    Warfarin has a very narrow safe therapeutic range and thus INR  needs to be checked regularly for your safety. 

    How the results are sent to you depends on your service. I've seen a yellow book, emails, home coagucheck readings and letters or forms sent in the post. What is important is that we can see: current dose, recent inr reading , next appointment date and range.

    I hope that this clears up the process. If the GP has a current result on the computer sent by the clinic then often it is sufficient but the pharmacy have no link until we get access to your summary care record later in the year.

  • Yissica, thanks, that's helpful. I'm lucky that despite all the moves, each pharmacist has been at the GP, so they get the script from the doc, who runs the blood checks (even if they don't, the results from the anti-coag clinic are copied to the GP), so all looped in. 

    I have to say, that as I am in the Forces, so slightly sheltered (although all the GP surgeries were run as if civilian and used local NHS anti-coagulant clinic) , I leave soon and am keen to understand if I'll sign on to a "normal" GP and find the process completely different!

  • Oh and I should say, I empathise with LoppyLou - you'd think there would be a standard process, but each NHS authority has a different way of doing business. Seems crazy, but I guess they add up all the lines and feel they are being most efficient in each area...

  • We only have one government though..... 

    As yissica said they need this info as they have to prove this at their Annual Government visit...?!

    My GP and my pharmacist until now have not been following those guidelines since I started.. Have I been at more risk due to non compliance? 

    Anticoagulation clinics decide that when you are in range you can go longer between each test..... Will that be our problem to prove reasoning for irregularities in testing?  

    What a nightmare like things aren't tuff enough 

  • I'm a bit gobsmacked!  When I started on Warfarin in the early days I was just given a script for 3 different strength doses of Warfarin and told that depending on the INR the dosage can change.  (Which it did, and often) So I had 3 bottles of the dangerous drug in my possession!! 

    Seriously, though, I can't believe that you have to jump through hoops to get this. It's just a petty bit of bureaucracy - unless there's a plague of rats threatening your fair shores :)

  • 😁 yes just like you I'm prescribed 3 different strengths which I take in variation to the results found at testing....

    Although saying that there has been a president  set previously in the 14th century regarding a plague of rats and these fair shores.....🐀 😁 

  • The difference between these fair shores and other parts of the world is the UK residents often have one GP and many pharmacists whilst other countries have one pharmacist and many doctors treating with no link between them.

    I've worked in US and it is very different to UK pharmacy.

  • Well today is a real day of firsts I have had 2 calls this am with regards to my INR test taken yesterday....firstly the anticoagulation clinic to say your at 5.1 INR, don't take any warfarin today....take usual dose after that and then drop the dose on Sunday to 5mg see you next week. 

    Second call was my doctors surgery.... (that receptionist) to tell me I am at 5.1 INR I asked if this info had come to them via the computer system, it did not it's not on their system as yet. 

    They know this because they called the anticoagulation clinic personally to get those results. they then asked me my dose and when I will be having my next test..... I said that they should of asked the same person who had given them my INR results when they called...as it was that same nurse who had just given me that information. I told her what I had been told her blankness screamed down the phone at me. Indeed I added to her confusion by pointing out that this result would of been different if not an actual blood test...? A tumble weed could be heard down the phone 

    "So you'll bring in your proof after it arrives in the post, so have you got enough warfarin to last you the weekend.? 

    So still no prescription and another visit to the doctors unnecessarily. This not so new system is going to be the bain of my life.....

  • Sorry about your warferin problems,  I have been on warferin for nine years and i've never had to show ID, to be honest with you, I have never had a problem.  I would get intouch with your clinic and see what they have to say. I wish you luck, and I hope they have a solution to your problem.

  • When I was on warfarin I was just given a selection of warfarin doses and told you will be told which ones to take. Now Im on LMW Heparin no one seems very keen to monitor me at all! Funny that when they are both anticoagulants!! Also when you fill out forms. discharge forms etc they are only geared to warfarin! To bad that plenty of people now take other kinds of anticoagulants - when are they going to catch up!

  • I do wish I was on an alternative anticoagulant but I have been told that I would not ever be able to take anything other than warfarin....(I'm not suitable due to my condition....?! not sure what that really means as we all have APS!? 

  • Why don't all forms of anticoagulation need monitoring...!?

  • Ive been taking warfarin now for six years. I had a yellow book to start with but as there was only a limited stock at the hospital (they do have them, they always seem to have run out when I go for one), when I had filled the book, I ended up buying a little note book which is what I use now. My GP surgery never ask for my INR results when getting repeat prescriptions (I'm in there every other week for testing). When I go to the chemist they just ask for my history since my last appointment, and ask for my INR result, the date I had it done, and when it's due again. I have never been asked to show a yellow book, or the results I have in my notebook. The only person who looks at my results is the consultant I see at the hospital, and this is only once a year!

  • Thanks for your version of event's hearing others experiences has been a real eye opener 

  • I have been in warfarin for over 40 years and a few years go my pharmacist, who knows me well, asked for my INR test sheet then said, oh, you self test don't you. It seems that some pharmacists were checking what the ongoing recommended dose was, after INR checks at surgery, before issuing the next lot of pills. Aside from that I have never heard of my such checks. I live in UK, self test and self dose.

  • I think, and emphasis think as I do not know for certain, that it is because the effect of warfarin is unpredictable to a far greater extent than other coagulants. It is affected by so many other things, vegetables , alcohol, other drugs etc, where's other drugs operate in different ways and their action is not influenced to anywhere near the same degree as warfarin by outside factors.

  • Thanks Tim for your long standing knowledge it is greatly appreciated 😀 

  • I'm only 46 I too had yellow book. So not an old thing!!! Days of yonder. Was last year. I'm now on xeralto. But was only asked for book when at surgery for my inr appointments. Never at chemist. So in answer get a yellow booklet. You can get at docs or nurse who does your inr.

  • Lol 😁 Yes I have done that thanks molly...i recieved one yesterday with the results letter they now use at my anticoagulation clinic.....

    I believe they use this letter/printout system so that the result is computerised / centralised and visible then to those with appropriate access.

    They don't use yellow books anymore so they have plenty to give away....... Said my anticoagulation clinic at Mount Vernon Hospital

    I also have my original one from last year which of course is out of date since there system changed. I had a spare letter / printout one but it was dated in March, so my doctors receptionist wouldn't approve any of these that as proof that I had been going for the tests at all....

    Thanks though again its great to see how everyones experience is different.

  • Update - Yesterday I recieved this month's medications all on repeat and delivered by the chemist as I have mobility problems....the only one that was absent was the warfarin (the most important One).

    I called my docs again and spoke to a different receptionist who apologised for the hurdles and stress I'd been put through especially as they actually had recieved all information requested as proof. 

    She posted the repeat to the chemist for the warfarin. 

    Then told me that apparently this was all due to the fact that the doctors had not been monitoring anybody as they should.... 

    Which is no surprise.......

  • I'm glad your sorted out. Last thing we need is stress. That mainly caused stroke number one.  When it's on repeat you still might have to show form if your inr fluctuates. All the best to you x

  • X

  • I remember being on warfarin and it being so difficult for nurses to take successful blood samples to monitor my INR and ended up being tested sometimes weekly, sometimes twice a week as my levels would fluctuate so much. On one occasion I stopped going for blood tests to give my veins a chance to recover and was told that if I didn't go for monitoring I would have my prescriptions stopped for my own safety. The irony is not lost on me that suddenly taking someone off their anticoagulants by cutting off their prescription is arguably just as dangerous to their health, if not moreso. INR monitoring always seemed to me more focused on the arbitrary numbers rather than the well-being of the patient. For the most part you know if your medication is working or not in your own well-being, a number retrospectively telling you you were '2' or '3' doesn't seem overwhelmingly helpful to anyone other than for automated dosage calculations. 

  • You tell us you have had a CAPS which is a serious condition. I have found that for us with APS,  the most important thing besides having a Speciallist of our disease,  is anticoagulation.

    An INR of 2 or 3 is very important because even if we do not feel the difference,  if a dip  happens very quickly, a lot of odd things happen in our body if the blood is not thinned properly. We have microclots with this illness also.

    What anticoagulation are you on at the moment? Are you ok now? We also need to selftest when on Warfarin to have a good result.

    Best wishes from Kerstin in Stockholm 

  • Think you may of posted to wrong person....luckily not Had CAPS.....?!

    In answer to your questions though....

    warfarin and hydrochloquine last INR 7.6 last week..since last week told to skip 2 days warfarin then 6mg mon to Fri 5mg sat to sun.....

    I have just got a loner machine coagucheck Xs but its taking 5 weeks so far for my GP and pharmacy to organise prescription for test strips and lancets fingers crossed will get the chance to start self testing as specialist advised.....my Inr is very unstable it was below 3 a few weeks ago so hoping I will have better control.....

  • My Inr is meant to be between 3 and 4

  • Yes my question was meant  for "disloyalorder". 

    It sounds to be difficult for you to take Warfarin and selftest as to machine, strips and lancets. Do you have Lupus Anticoagulant? I guess not as you Specialist wants you to selftest.

    I take 5 mg of Warfarin each day. If I am too high in INR I reduce the Warfarin with 1/4 of a tablet and sometimes also eat more broccoli. If I reduce the tablet and also eat more broccoli (more K-vit) I make a "double" reduction of my INR. It get faster with the vegetables than with the tablet to lower the INR. 

    How much you should change the tablets of Warfarin you are taking,  depends on which amount of Warfarin you take. The amount is very individual  but the INR  is important to control and keep at a steady level.

    You will learn but it takes time. 

    Kerstin

  • As I selftest every second day it is easy to follow the INR. If i reduce the Warfarin with 1/4 of a tablet (each one is on 2,5 mg and I take  2 tablets each day) I only do it ONE day otherwise I could go too low as i also eat green vegetables every day. 

    I keep my INR in range with both the tablets and the green vegetables. More green vegs and less tablets makes the INR down (thicker blood).

    BUT we are individuals!

    Kerstin 

  • Thanks for the advise....this level of control is what I am hoping to get to.....

    My APS specialist said test 3 times a week, making that happen is proving to be harder than I could of imagined. 

    Anticoagulation clinic scoffed at that saying 3 times a week is to soon for any medicine changes, my specialist said anticoagulation clinics don't understand APS.......... Pharmacist who new nothing spoke to supplier (Roche)?! (as she said the professionals who know more) told her I should only test once every 2 weeks, !?!?!?!?

    I am currently testing once a week at the hospital due to uncontrolled INR!?!  so that doesn't make any sense ...!?

    My GP who doesn't have any clue about any thing but the red Flag that has been served on the practice in regards to their lack of compliancy and protocol in every department particularly Warfarin.

    Anyway 6 weeks since started process of getting self test strips and lancets fingers crossed it's not much longer.....

  • Do you have Lupus Anticoagulant? When you selftest you must first doublecheque with the lab test in the vein. There is a difference between the machine-value and the labtest in the vein at the hospital.

    It takes 2 - 3 days for the Warfarin to "kick in" but only 15 hours (for me) to change the INR to the desired value.

    Kerstin

  • 15 hours with the green vegetables I just wanted to say. It is getting late now ........

    Sorry!

    Kerstin

  • Tested high titres on all 3 blood tests for APS 

    My brain won't function to look through what is now vast amounts of paper work for exact figures 

    Will be self testing in tandem with the hospital anticoagulation clinic until fully trained and confidentiality assured getting similar read outs......

    Fingers crossed today I get the lancets and strips.. Thanks for all your advise I'm so glad your all here to take me through this....💗

  • In response to your post, yes, I have had a CAPS incident after being taken off my anticoagulation (not warfarin) while I was already in hospital, but I had been managing APS for seven years prior to that, 6 of them on warfarin. i have never questioned the importance of anticoagulation, nor regular monitoring, but I do still think that the significance placed on INR numbers can cross the line from a useful reference to data for data's sake. Monitoring PT/PTT is definitely worthwhile, but if I feel fine it doesn't make any difference to me if my INR is 1.9 or 2.4 and incrementally tinkering with warfarin levels that are so easily influenced by diet/lifestyle/other medications/general health seems to be missing the point. I have had three serious medical incidents - 2 clotting, 1 bleeding. All of them I have known that I was seriously unwell, and I didn't need to wait for an INR result to tell me that. 

    Also, as an aside, my CAPS incident was predominately vascular microclotting (venous sinus thrombosis). Experts aren't certain that anticoagulants are particularly helpful when treating microclots anyway. 

    All the best

    Lisa

  • Your right sometimes the INR results seem to bare no relation to how I'm feeling or what symptoms I'm having that day....warfarin has not been the panacia or solution to me being cured of this foul condition as I'd once hoped it would be....

    I'm trying to get more control over something that probably cannot truly be controlled.....ultimately?! 

    Sorry if this is obvious but what's PT /PTT?!  I am still relatively new to this so excuse my ignorance.

    What anticoagulation are you on instead of warfarin.?

    Good luck 🍀 and glad you got through the CAPS s 

    Thanks though 

  • I think the main benefits of warfarin are that it's readily available (ironic considering the topic of your thread), cheap to prescribe, and it's been around so long that there aren't many surprises. Plus, there's a known antidote, which I'm uncertain the newer drugs have licensed yet. So I do understand entirely why it's everyone's go-to drug to treat, but I just didn't get on with it at all. I do also wonder a little if having warfarin work more or less for most people has meant that there's less urgency to research cures, but that's my own personal skepticism. 

    Apologies for speaking in acronyms, PT = Prothrombin Time and PTT is just Prothrombin Time Test, they're usually the tests that are used to give an INR reading.

    I completely identify with your desire to control what can feel like the uncontrollable with APS. I found that having to have INR tests so frequently meant that I could never truly 'forget' about it and get on with my life, as I had to co-ordinate my life so much around blood tests. I discussed this my consultant when I heard that there were newer alternatives licensed (at that time it was just rivaroxaban). I didn't particularly get on with rivaroxaban either, but the liberation I felt from not having to constantly book and go for blood tests made me feel so much better. I'm on Apixaban now, which so far has been problem free. 

    It depends on your personal circumstances and reactions to medications, I do suppose, plus also I can understand if being on the newer drugs might not be right for you - there is always the element of the unknown, lack of current antidote other than elapsed time, and the absence of monitoring can feel a bit like you're cast adrift if you're used to it, but in my personal experience it was worthwhile. 

  • Hi Lisa,

    Can you tell me if Apixaban is approved  for the higher INR-target of  >3 as most of us need to be free from symptoms and properly anticoagulated?

    Everyone should be selftesting when using the anticoagulationdrug Warfarin.  But as we know it is not possible for all our members to do that and that is a pity. 

    Kerstin in Stockholm

  • I can't comment on what Apixaban has been approved or not approved for in terms of INR, but I would assume that my consultant wouldn't prescribe Apixaban if he didn't believe it would provide proper anticoagulation, particularly given my history of CAPS.

  • Thanks for the response I did write a long response which seems to not be here now.....!?

     Will try and remember what I wrote but will get back when feeling on the ball again fatigue and focus are so elusive these days 

    Thank you for your insights andexperiences 

    Lou

  • We have too thick blood and the treatment for this illness (APS) is anticoagulation!

     There are members here who also have other autoimmun illnesses ("cousins" to APS) like "SLE", "Sjögrens", "Thyroidea" and "Fibromyalgia". In those cases other treatments are very often necessary. 

    I have all three antibodies in high titres since several years and I am primary APS. I have had a lot of neurological symptoms and a well-known Specialist at the Balance-clinic here in Stockholm told me that I had microembolies. The balance affects  both eyes and middle/inner-ear. It is connected in the brain.

     He suggested I should try Warfarin which I did with very good result. My symptoms disappeared 5 years ago after I had started Warfarin and I have only a light Tinnitus left.

    I selftest every second day and can follow my INR. I know how much the INR fluctuates in one or two days. I am Lupus Anticoagulant which is one of the three antibodies tested for APS. There are perhaps other APS-sufferers who do not have Lupus Anticoagulant or do not have an INR going up and down like I have but how should you know if you only test every second week or every month that the INR is out of range?!

    As many of us have microclots they are not always seen on a Scan of today. They are so very tiny. But Warfarin helps just ask me!

    I know how important it is, if you are on Warfarin that is, to keep a constant steady level within the therapeutic range.  My INR should be between 3.2 - 3.8. I feel best at the higher number.  

    There are other anticoagulation drugs  if it is impossible to have a selftesting machine and strips, lancets  etc. Several people here are on Fragminshots and also I take a Fragminshot if my INR goes under an INR of 3.0. Perhaps Warfarin is not excellent for everyone but Prof Hughes has said that Warfarin has been successful  with APS and its many different symptoms. It has very few sideeffects also. Selftesting is important though.

    So I disagree with those who say that Warfarin does not help with microclots. BUT an INR high enough and a steady level is necessary!  I am not a Doctor but I am a living evidence of the fact that we need anticoagulation and Warfarin helps even with microclots. I am primary APS  (no other known autoimmun illnesses known so far).

    That was a long one! Sorry but I just had to write it!

    Kerstin in Stockholm

  • I must have dropped something when i was writing ......I meant to say...... " My neurological symptoms disappeared almost at once as I was higher in INR and stable and now 5 years after I started Warfarin I have only some Tinnitus left which does not bother me."

    Kerstin

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