I have just read that GP's are taking people off warfarin if they have not had a stroke, PE or DVT. It seems Kate has corroborated this.
I am seronegative diagnosed by the Professor himself on livido, miscarriage and all normal symptoms. Have positive lupus/ Sjogrens too.
I am really scared I think I have had TIAs, but if I am put back to aspirin or plavix ( which did not work) or plaquenil which I reacted badly too twice. My life will end, I can't function, in fact I can't even see properly if my INR goes below 3.
Gosh this is so scary.
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Jade
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I have just been thinking I developed very severe tinnitus last year on one side overnight, , not noise induced. Professor Hughes says it is most likely as result of a tiny clot. Do you think that counts as a clot for warfarin purposes?
Thanks, I feel slightly better. It makes me so sad to see the Hughes Syndrome Foundation, obvious named after our lovely professor backing this new decision. It's like the NHS are trying to erase all his good work bit by bit.
I thought all I had to worry about was eventually buying test strips, never contemplated warfarin being remove especially when we were put on it by a consultant , then in the NHS.
How sad we have to think, as I have seen written, 'I've had a stroke so I'm safe'.
I would like to see the numbers of serious bleeds from warfarin and how many were APS patients. Against serious events not on warfarin.
These guidelines were only revised last year which is why they're only trickling through to doctors now.
We certainly don't agree with the INR target range of 2.0-3.0, but they have a caveat in that is says 'normally', so our charity continues to campaign a higher range.
To be honest I'm not thinking about the low INR I'm thinking about no INR and a life of a disabled person again. I can't believe the Foundation in any way support these changes when they go against the man who named their Foundation in the first place. It is shameful.
This decision is supported by ALL our medical advisors - hughes-syndrome.org/about-h... who are guided by the proven research and evidence, and want the best for the patients ie. not endangering their lives with unnecessary medication that could cause life threatening haemorrhages. Our charity has a duty of care to our members, supporters and patients including the setting up of Health Unlocked to provide factual information for patients.
Yes, Jade of course they both are. Your original question was concern about your GP taking you off warfarin. If you have a letter from your consultant stating that they believe you need warfarin (a tiny minority of patients do if they have severe migraine and other intense low level symptoms ie. not a thrombosis) then you can expect your GP to take this on board. However, the GP is in a difficult position because according to the BCSH guidelines they are not supposed to let you continue on warfarin because of the dangers. This is why I suggested you draw up a contract with your GP (please see my earlier post two days ago). An APS specialist is the only person who should prescribe your medication - Graham and Munther only advise warfarin for a very small number of patients, usually on a private basis, because the NHS believes the dangers are too great, this is why your GP is in a difficult situation - there is no joined up thinking between private and NHS healthcare in the UK. The alternative is to ask your private healthcare consultant to prescribe for you, and there is a recent similar post: healthunlocked.com/hughes-s... which explains someone else's situation regarding this which you may find helpful.
I would like to add I was prescribed warfarin by Professor Hughes while he was still working for the NHS, but he stands by it and has written this year to the GP saying he wishes me to continue. Professor Hughes is my private consultant and I will stay with him until he retires then switch to Professor Khamasta if he is still there. So far my GP has not said anything to me about my warfarin.
Yes, Jade - this makes sense as much less was known about the dangers of prescribing warfarin for people without thrombosis before 2005 - the year Prof Hughes retired from the NHS. The new BCSH guidelines only appeared last year - 2012. Let's hope your GP simply takes the advise of your consultant.
I think because APS is such a 'new' disease, we are on the cutting edge of research and the goal posts for treatment are on the move at the moment. Also, I personally foresee that we will start being treated accordingly to the results of our blood tests - aCL, LA or anti-beta2-GP1 as all the research is focussing on this. Even better would be the advancement of repressing the antibodies altogether which is being researched at UCL. However, this will be some years off unfortunately ...
AngieF I read it on another Hughes support site, quite by chance, within the thread Kate had written an email confirming this was correct. The person who wrote it had had hers withdrawn but due to returning symptoms had it reinstated.
Hi Jade - you may be able to sign a form saying that you consent to your doctor prescribing warfarin and that you won't sue them if you have a hemorrhage? Unfortunately, there have been too many deaths from bleeds to make it a safe option for a doctor to prescribe a very powerful anti-clotting agent to a patient who has not had a thrombosis. I realise it's difficult for you as a patient whose been managing fine on warfarin, which I why I suggest you get a contract drawn up with your GP. If anything untoward happened to you (such as a cerebral bleed), they could be struck off if they don't follow the guidelines. However, I've been hearing of a few patients who have drawn up contract with their GPs and/or anticoagulation clinics so it might be the way forward?
What are anyone thoughts about changing from Warfin to any other blood thinner such as Zerrelto? Does it worry anyone that your blood levels or diet aren't monitored? How do we know our INR'S are therapeutic?
I was on apixaban and at first I thought it was great not having to test my blood. I soon realised that it wasn't keeping me clot free however and I'm doing much better now on Warfarin again.
I prefer to know what's going on and so for me warfarin is better, although it's not perfect because it's so sensitive to what we eat or drink. I have my own coaguchek machine and test every three days, then adjust the dose slightly if it has dropped or gone too high.
I was struggling to keep my INR up in the heatwave we've just had, which is odd really because the heat usually thins the blood. I think it was probably becos I wasn't eating much as the crazy high heat took away my appetite.
I know that others prefer the Noacs but I think they are usually taken alongside an anti platelet if they have APS.
I have just been in hospital for a couple of puncture site procedures and I had a proper Bridging Plan with Fragmin injections pre and post the procedures. I still experienced horrendous pain and micro clot type vision disturbance symptoms post procedure but I'm now beginning to recover because my INR is coming back up.
I had an operation last year while on Apixaban with NO proper Bridging Plan, I just had to stop apixaban a day and a half prior to the operation.
I was on a heparin infusion throughout the operation however the heparin injections were stopped one day after the op and against my wishes I was put back on Apixaban.
What should have only been a three day hospital stay, turned into a twelve day stay, where I experienced the most excruciating all over body pain I have ever known, plus acute migraine, vision disturbances, loss of peripheral vision etc etc, most likely courtesy of micro clots just about everywhere!
Maybe these new Noacs will eventually prove to be successful and safe for those with Sticky Blood but for the time being I prefer to be on an anticoagulant that's been around for many years, one that the medical profession has a clear knowledge as to its side affects.
I personally prefer to wait and see what the long term effects are of these new Noacs, before I will consider switching to one of them again. Claire 😬
My doctor wants me on Warfin. He says there isn’t anyway to monitor safely with APS. The lab where I go to get my INR told me never to switch. They said warfin is a old well know and never go off of it. 🤗
Quite frankly I could cry. I have read the haematologists guidelines and among other things it appears to dismiss everything Prof Hughes and Khamasta have done. It seems to me they fail to understand the difference between a person having a stroke, or heart attack who does not display any other APS symptoms. And those of us who suffer these other symptoms and have let ourselves down, it seems, by failing to have a heart attack or stroke. How stupid of us.
I'm scared to put my repeat prescription in now, I feel like we are a ticking time bomb. Waiting for the day they call me and say time to go back to 24/7 headache, severe fatigue, inability to work, see straight, walk straight, or even complete one household task. They think they can play God with outlives while not suffering themselves. Only a non sufferer could say it us better to live with all our symptoms than live with risk.
Agreed, I am increasingly dealing with more and more Sero negative inquiries, some people have passed a test in the past, and as we know the test goes away. The fact that I was Sero negative Lupus for so many years, despite clinical symptoms says it all.. left with such an over active immune system that I can't even tolerate something like Plaquenil. We as patients have to do more. We have a voice and there is always NHS choices to leave feedback on, whether your local hospital or one in London, you do not have to use your name, but if treated badly or discharged then consider what you need to say, politely and firmly. Mary F x
Do not back down. It is your body, and you know how your own body ticks. I am sero negative, my INR range is 3.5 to 4.0 If it drops below 2.9, my migraines, and speech becomes slurred and i speak and writ back to front. I feel there is an undertone going on with these guidelines. Stand your ground Jade. Its your body. Bernadette/ Bernie
I speak and write back to front too when my INR is too low!!! I thought it was just me, very happy to discover someone else who does the same thing! 😲 Claire
I have just switched back to warfarin with an INR of 3.5-4.5 from Apixaban because it did not keep me therapeutic at all.
I had to fight for this and go against my London based Heamatologist decision to make me stay on Apixaban. My GP supported my decision, as did a local Heamatologist but my GP also very adamantly reminded me of the risk of bleeding when having such a high INR. I would happily sign a disclaimer to say I'm aware of this and to absolve my GP of any blame if I did.
I realise you haven't had any clotting events but that's most likely because you have been preventing them with Warfarin. I can completely relate to the symptoms you experience when not therapeutic, as I experience the same symptoms too, it truly does make life feel like it's not worth living. I always know when my INR drops below 3.5 as I become so symptomatic and unwell and feel so much better when it's above 4.
Please stop worrying, as this will make you feel even more horrendous but do stand your ground. It is your body and if you know that you need to be on Warfarin, ask to stay on it and like others have suggested perhaps sign a disclaimer for your GP.
I have had multiple clots, dvts, PEs, TIAs and CVEs and despite having had three positive Lupus Anticoagulant blood results, I am still fighting for an APS diagnosis. I have pretty much every symptom of both APS and SLE and will be seeing Professor D'Cruz next week. I'm truly hoping that I will finally get a definitive diagnosis and then no longer have to fight so hard for the treatment I need.
Try turning the tables on the doctors and if anyone tries to take you off warfarin, ask them to sign a disclaimer saying they will take responsibility if you experience a TIA or stroke?! 😉
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