Sticky Blood-Hughes Syndrome Support
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Unstable INR

My partner had a AVR in 2003 and has been on warfarin ever since with little to no problems. However since 2016 he has been very unstable from having elevated INR >8 to low INR 1.2. These occasions can last several weeks. He consistently takes his warfarin the same times each day, does not drink or smoke, we are careful on diet etc. His consultant can not seem to find the answer. Just wondering if anyone has had similar problems and if so, what the outcome was?

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Hi, there can be many reasons from diet, to virus to supplements etc, I have to ask does he have a diagnosis for Hughes Syndrome/APS, otherwise known as Sticky Blood or Antiphospholipid Syndrome. As this forum is specifically for this, however as you are here, there is a very good book around, 'Eat on Warfarin' by Cath Atkin, who has worked out a system. MaryF

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No he hasn’t. Apologies. I didn’t realise this was a specific forum. Thank you for the book recommendation though x

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Sometimes people have this, and it is not picked up by the medical profession, often other family members past and present, have a history of migraines, perhaps miscarriages and stillbirths if female, and also heart attacks and strokes at a young age, also other relatives, may have autoimmune diseases including thyroid disorders. MaryF

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❤️ Mary. You’re kinda great.

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Sounds not good. Perhaps he should once more test the bloodtests for APS. He had an heartvalve-operation in 2003 and since then he has been on Warfarin. Is that correct?

Our antibodies can go up and down and we are diagnosed on either symptoms or on positive antibodies. I have two leaking heartvalves and have APS.

The antibodies he should have tested are:

1) Anticardiolipin antibodies (aCL)

2)Lupus Anticoagulant (LA) He can not test LA when he is on Warfarin. But you can get the diagnose from one or two positive antibodies also.

3) Anti-beta2-glycoprotein-1 (anti-B2GP1)

There is a huge difference with his INR and I can not understand why. It is only the last 3 years.

You must take it up with the Doctor who is responsible for his anticoagulation.

Good Luck!

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Thank you for your advice and information.

We don’t understand either as he has been on Warfarin since 2003 with no problems. He was involved in a theme park ride accident in 2016 which caused internal bleeding. As a result he was given frozen plasma as there was concern he was allergic to vit k. However the frozen plasma was quickly taken off him as not advised for those with titanium valves. He’s not been right since. Last year he contracted Sepsis 3 times and struggled with high and low INR’s. It’s bevome frustrating as the consultants don’t seem to know what to look for so I’m doing my own research and trying to find out about conditions or reasons this may be happening with his blood. Really do appreciate any thoughts or feedback x

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Nice possible catch, ladies. You never know. If if sounds suspicious- be the safety net, absolutely.

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Hi, whether or not u have aps an erratic . INR will leave one exposed to the very things that one was initially prescribed Warfarin to avoid!

You will have a target INR and a range eg my range is 3.5-4.5. My target is 4. Note that it is usual for aps patients to have a much higher INR than other warfarin takers.

If mine goes below 3 I take nightly Clexane injections to protect me from clots and likewise if it is too high, I am given vitamin K to protect me from a bleed ( haemorrhage ).

As stated above there are three antibodies connected with aps. One of which is called Lupus Anticoagulant (LA). Once one is taking warfarin testing for LA is not effective. Unfortunately, Those with LA often find their INR swings wildly.

I am LA positive and have been in range only 52% of the time over the last two years. That's virtually half the time I'm not protected and other aps symptoms are present (Google to see the extensive list).

I'm tested once or twice a week via finger prick and occasionally by vein). I've just been referred back into the care of hospital haematologists as I'm considered too unstable for the community testing at the pharmacy. No one can stabilise me no matter what they do

I don't smoke, have a very occasional drink, drink lots of water, have a good stable diet, take my warfarin at the same time, have had every drug and supplement checked before taking

I also have Lupus and Sjogrens

As an aps sufferer an erratic INR means I feel very very ill most of the time.

This is a long reply without an answer however my advice is to insist on seeing a haematologist asap as you are not being protected for the very things you were prescribed warfarin for while out of range. I hope this has been some help to u. Good luck 💋

PS if anyone has any advise for me / that be great 👍🏽

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Do you exercise much one day and the other nothing?

Try to selftest every second day for some weeks and write everything down what you eat, drink, exercise, a sudden drug (perhaps a paindrug), how much greens etc. Perhaps you already do this and then I can not understand what is happening if you have not started any new drug that interfere with the Warfarin very much. Nothing wrong with the selftesting equipment? You also have Sjögrens. What do you take for that? Plaquenil?

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Sadly I can't exercise at all I'm too ill to do more than little walks. At the moment my heartrate's so low I feel dizzy when I do move! I need someone to steady me walking about

I can't take Plaquenil as I have long QT which makes it dangerous

My haematologist says it's NOT worth testing more than twice a week, which is done by her at the hospital. We have discussed self testing but she said I'm way to unstable for that at the moment.

I've been like this the whole two & half years I've been on warfarin! 42% in range do not really medicated at all !

My diet is very similar each day and I understand all about Vit K etc.

Everyone is at a loss with me and I'm at my wits end as I feel so ill 😭 I'm just about ready to give up, I'm driving myself mad trying to find ways to help.

I don't know what causes what. Lupus. Sjogrens. APS. Heart. If I could I'd run away!!! I'm fighting not to jump in the pit of depression but I don't know how much longer I can hold out. Is it worth it?

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I am so sorry to hear you say this........! You have a lot of problems now. Also when our loved ones do not understand or/and will not realize this illness is real. That is not easy when you feel miserable.

I understand that you do not have a Specialist who can help you with your coagulation and your low heartrate etc. But I can not understand why you should be too "unstable" to selftest.

I may have asked before: Are you Lupus Anticoagulant?

I do remember that wonderful post you wrote not long ago to cheer us all up.

You have written 3 books for children that are published. You like colouring and i bet you like music also.

If you could stay in hospital for a week or so and they could do a thorough examination of everything with all the necessary bloodtests etc.

You need help I hear that and I wish i could do something. I wish you will get some good advice from some of our sisters and brothers as we are together with this illness. But we have eachother as you said.

Love from me!

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Thank u for ur words. My mums fantastic she truely understands but I'm calling on her too much. She never complains but is nearly 70 and has dad to look after. It's little things like washing my hair.,. It's not been done for nearly two weeks. By the time she has done the essentials how can I ask for more?

I'm paying £300 a month for help now including two little dog walks a week I just can't find any more cash even the dog deserves more.

I have a haematologist who is doing her best a rheumatologist who is brilliant and am under the best cardiology team in London.

I've just spent a week in hospital where they did venous tests each day. They saw what I was eating and they said 'we will sort this!' They couldn't! They were amazed at what was happening and couldn't explain it

Last night I was reading Sticky blood explained again, which was helpful I had loads of pains in my head - I call them micro clots I took the Clexane and within half hour the pains stopped and I just felt kinda bruised if u get what I mean?

I really am trying but running out of steam now 😥

I have a counsellor but have that on hold as I'm not well enough to attend. Due again to Long QT I can't take antidepressants as they r too dangerous. I just feel so trapped there is no way out no where to turn.

I should be happy I've a long awaited granddaughter on the way - due in May our 1st grandchild; but it is just highlighting what I won't be able to do with her

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I am glad that you have good Doctors taking care of you. You will see you will soon feel ok again. Difficult to have 3 autoimmun illnesses. Good that Clexane helped you!

So you know it is a little girl on its way.

Take care

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Kevin (my partners) INR range is 2.5-3.5. If his INR drops below 2 he self administers Clexane and if it goes up high he has to go into the local cardiac day unit for an oral dose of vitamin k. Currently his INR is over 8 and has been for 14 days. He has had no warfarin for 14 days and has received 3 oral doses of vit k over the past 3 days. It’s still up. These long spells of highs and lows have become more and more frequent to the point he rarely seems to be in range. His cardiologist has only now referred him to haematology whom I’m hoping will find the cause for this. ☝🏻

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OMG I hope they can control it soon. It's do frustrating! I'm sure he doesn't have alcohol and understands the diet. I wish u both luck x

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My INR having a funny do at the moment too . I self test every other day , mo day it was 5.4 today 2.7 🙈

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Do you have a Fragminshot to take when it dips like that! Is there a difference between the vein and the fingerprick value?

Do you take sudden other drugs from day to day? Exercise nothing and a lot the other day?

Eat greens and less greens and what greens do you eat if any? Do you dring alkohol one day?

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I am sorry I have occupied your post. Please tell us how it goes for you and your husband.

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Yes I've rather taken over too. But u can see that ur not alone in the INR struggle. Good luck x

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I have APS and many other problems - my INR is so erratic that i test every 3 days most of the time - as said above diet is big with this but i did research and with me meds can have a big effect on this - consistency with time meds taken and also with me the active ingredients are important { doesn't need to be a call brand -generic are OK } but watch the inert ingredients as with manufactures can change these so keeping the same manufactures is important and has helped me. - it may or may not be part of your problem but i would check to see that you have this consistency with all meds . Best to you guys C & J worth looking into

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Thank you for all your comments. My partner is still undergoing tests with haematology to try to get the the bottom of the INR mystery. He did have to spend a night in hospital the week before last to receive IV vitamin k as oral vit k was not working. Thai has brought his INR back with range and so far (touch wood) seems relatively stable. We have made slight change in time he was taking warfarin so he is not taking at same time as other meds. Has anyone noticed this can make a difference.?

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Does he have a diagnose of Hughes Syndrome/Antiphospholipidsyndrome?

We can only help those members with our illness as this is an autoimmun, but also a blood-disorder with too thick blood that has to be propperly thinned. We must never stop Anticoagulation.

Very important to be in the therapeutic INR-range and to have a Specialist of autoimmun illnesses who knows how to treat people like us.

Best wishes to you and your husband!

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