has written a letter which I am sharing here She has just had confirmation...

THIS HAS TO END. We have had enough now.

INRs above 3 are vital for all, INRs higher than that are vital for people who have ongoing problems, home testing is vital.

It is all well and good to have fancy meetings but what we need right now is a consensus across the world that INRs must be over 3 at the very least and home testing and managing must be encouraged. This will save lives and we are heartily sick of not being heard. WE LIVE WITH THIS.

Yours in earnest hope, Kay Pryszlak (formerly Thackray)

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  • After reading this I'm going to be having another word with my consultant. I have an extended rage 2-4 meaning my ideal is 3 as I understand it? Yet the coagulation team that monitor my INR still try and keep me in a 2-3 range. I really think our bodies get use to the drugs so we need to take more and more to keep us at a stable level. When I was put on warfarin nearly 8 years ago I took 7mg a day to be at 2.5 now I take 15mg and still struggle to keep it just above 2.

  • Thankfully I am under the care of St Guys & Thomas is London who are very forward thinking, saying that I have had my fair share of incompetent care givers, my GP practice have no level or grasp about APS. I home test, my INR is between 3-4 but aiming for 3.5 upwards, ironically I know my body functions almost normally when my INR is over 5, anything below 3.5 & my speech slurs, I have brain fog & struggle to function often nearly falling asleep at my desk at work.

    This letter is powerful & thought provoking we forget because we live with it day in day out while others have to battle with care providers who are ignorant, no excuse. APS is on the rise, more medics need to be clued up to the symptoms & what we need as patients. Thank you for sharing. X

  • That how I feel when I fall below 3.5. X

  • It is so hard when medical people don't get it or believe you when you know how your body feels. X X

  • I'm going the other way though Gaynor. I have been on warfarin for about 13 or 14 years. Got up to about 14mg a day but now down to 6 a day! No changes to other meds or to diet. Do you know anyone else with an extended range like yours? I've never come across it before. When I first started we used to be given a target INR and we had a .5 tolerance either side. So target 3.5 but acceptable from 3 to 4. But it's gradually changed to a range of 3 to 4.

  • To be fair to the medics though, it is a balancing act between clotting and bleeding. And in these days of insurance claims against doctors they have had to start being more cautious. They can justify an INR of 2 to 3 more easily than a higher INR, certainly around 2 because that's what other patients have as their target. That's why we need top consultants to say that over 3 is better for many of us and for it to become a normal thing for APS patients.

  • Judi they can justify an INR of 2-3 out of ignorance over APS. Whilst APS is relatively new in medicine there needs to be a better understanding in medics, not to specialise in it but a basic working knowledge that is exists, rather than it being an after thought for so many who have gone through a life changing trauma, whether miscarriage, stroke, DVT or heart attack. Having INR set at 3-4 as standard for ALL APS patients should be a standard protocol. Moving forward it would be beneficial for children of APS patients to be screened for APS.

  • When I was put on it my target was 2-3 but my INR is so unstable I can go weeks and be ok then it just shoots up or down lowest was 97 highest was 7.5 in the space of a few days. They kept changing my doses sometimes twice a week.i complained to my consultant because by then 3 or 4 years in I was ready to just stop all Meds I was at an all time low. She looked at the amount of changes that were being made and at that time I was hitting above the 3 but the slightest changes to doses would send me way under. To stop the dosage changes she extended my range . The problem I have is coagulation clinic keep tring to keep me under 3 when I function better over 3.5.

  • Sorry if that's long winded but it's hard to explain in writing. Lol x

  • It's fine Gaynor, it's not long winded and I understand now. Coag clinics do get worried so easily! Very difficult unless you feel confident to self-dose. Can you get your consultant to write to them saying she preferred you to be over 3 if possible or whatever she is happy with? Or has she thought about trying you on one of the newer drugs? Did I ask you that the other day? Sorry if I'm repeating myself, my INR has dropped way below range and I'm having lots of cognitive problems right now.

  • I'd agree with you about the INR but it needs insurance companies to be educated too and it's bad enough trying to educate the doctors! That's why Kay wrote the letter. I don't unfortunately have any children so I can't really comment on screening them for APS but I think it's possibly something that should be left to the parents to decide for their own children. But all,APS parents I'm sure would always keep an eye open for symptoms in their children.

  • if i fall below 1 i have fragmin injections. my target on my blood form states 3-4 but because they have to manually put that into the machine { or so they say} lol i think they just cant be bothered tbh. i cant self test i had a trial run and my blood wont read right on them. it said i was on target until i suddenly went up to 6.7 and they sent me to hospital to have it drawn and it came back at 1.7. consultant withdrew my trial test and sent me back to hospital for weekly draws.

  • I didn't know you could go below 1, I've always been told that 1 is the INR of someone not on warfarin at all. How very difficult it must be for you to vary such a lot and to go so low. But it must be an improvement on not having warfarin at all. I do hope you manage to keep more stable and that you can get your INR up just a little! Xx

  • when i was first put on warfarin from fragmin i was 97

  • Judi sadly we couldn't have birth children after 4 miscarriages due to APS, we have adopted but see the fear in my Brother who sadly has crohns another autoimmune condition & he is frightened for his kids. My father died from a PE in 1978, my Mum's heart broke after my bilateral PE but thankfully here to tell the tale. Seeing my illness evolve she will often compare my symptoms to those he had in the late 60's when APS had no diagnosis.

  • i just happily bounce around between the range i have but i can tell myself when im low or high .