Hiya all, I spent the last week feeling nauseous and steadily worsened to not being able to eat without gagging. My Tuesday venous showed a rise in inr to 5.3. (range 3.5 to 4.5) so nurse and I decided on a reduction of warfarin my 1mg to 4.5mg. My nausea continued and last Saturday I was finally sick. It was black!! Then when I put toilet paper in that immediately went red. Blood!! I did a finger prick, knowing my venous would be nearly a point lower and prick read 8. The breathlessness that followed was frightening I could literally only take 3 steps and no more. My husband went back to bed so I could use his electric wheelchair to get about. Of course I did nothing about it and just rested. By Monday I was feeling sick again and so rang the dr for anti sickness tablets. When I told him what had gone on and showed him the gruesome picture I took he turned round and rang the hospital to admit me.
And there the fun started. I’d only taken 1mg warfarin for 2 days and when they took my blood it was down to 5.7. Super I thought, just a couple of days and it’ll be down again. But the doctors despite my pleading not to stop warfarin not only ignored me and totally stopped warfarin and clopidogrel, they stopped everything. All my heart tablets, statins, water tablet, hydroxychlorquine, everything!! They listened when I said please no vit k. But an hour later put it through my drip. I had camera into stomach to check and he took a sample out just to be safe. It was a massive bleed and when I was vomiting it out some went into my lung as well. So yesterday they did a blood test and what do you know?? Yup inr 1.2. I burst into tears and said I’d told them that’s what would happen. They said I was dangerously low and cause a stroke or heart attack. Surprise surprise. 🤦♀️ So last night I was given 5mg of warfarin and 2 injections in 12 hours and today all my tablets we restarted and so my inr today is……1.1. So I can’t go home until they are convinced it is raising up continuously. I’ve told them I can inject myself but they won’t let me home. It’s been so stressful trying to organise carers for hubby and doggy. I am so near to discharging myself. At least the care package is sorted for night now and day carers are staying a bit longer at their calls. So I’m on my hospital bed relaxing and totally fuming. I had medical students around today and I will continue to offer to have them hoping in some small way to teach the up and coming doctors at least something about APS.
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You poor thing, stay strong, I hope they get to the bottom of it all and also give you some contact advice so it is safer for you when you go home? MaryF
Oh dear that’s such a worry We with APS know a lot more on our condition than a lot medical knowledgeable people I do wish it were part of their training although I don’t know if it’s a specialised subject, I do know such a lot of people in all walks of life haven’t heard about it Good luck
I wonder why the inr went up so much initially? Are you normally fairly steady?
APS can just be so darned random in how it wreaks havoc with the warfarin/ INR.
This is really such a horror for you.
I guess if they were needing to do a scope and biopsy, then they should have told you that.
Informed consent means just that.
It is good you are still there so the inr can be drawn daily while you are still bridging- you don’t want a repeat. ( especially with a fresh biopsy.)
I have the same question as Holly- did they find out the source of the bleed?
Also- what are you working out now for help with husband? … so difficult. Can you ask a social worker at hospital before you leave? Is there a program at hospital to help you problem solve this?
Hiya Kelly. The only thing I can think of for the sudden rise is the fact I wasn’t eating. I’d been feeling really nauseous for a good week and it was getting worse. Then when I came in to hospital I was nil by mouth to have the scope. They said there was no reason that could be seen, for the bleed. I was only told yesterday that a sample was taken, just to make sure, but results take over 2 weeks. I felt great earlier when a Gastroenterologist came to see me with 4 other doctors and students, he started off saying that I have a complicated medical history, I laughed and agreed with him. He then turned to his group and said” this lady is what we call an expert patient. She knows more about her conditions than any of us put together! She must be listened to and her advice taken seriously “. I felt 10 foot tall. He is seeing me as an outpatient because, he says, something must be going on somewhere to have caused the bleed. Now comes the science bit………I’m going to swallow a tablet which will work through colon, bowel. Intestines, the lot taking images and pics of the whole journey until I poop it out the other end. !!!!!!Back to reality my inr came back at 1.3. So a bit to go then 😩 great hope for improvements today as I’ve had 2x10 mg in 2 days. 🤞🤞🤞
Yes, a camera pill. I’ve had one. They can also take random little biopsies.
Your iNR should rise soon. It’s a bit like filling up an empty swimming pool. It takes a while.
Must be right- the not eating caused the inr to go up. Espoif you were not getting any greens ( consistent) down.
But the question remains- why were you nauseated to begin with? A stomach virus? Food poisoning?
I’m glad nothing serious was found during scope.
I really do despise warfarin at times. ( just for this reason. Tummy bugs, etc.)
I’ll be very glad when an alternative can be found that works for us. This is why I’m riveted on Dr Jason Knights work with NETosis. ( NET traps. ) Basically- inflammation setting off neutrophils to creating some problems for APS folks.
Down the line he would like to see medications work on these neutrophils and inflammation, lowering the clotting propensity.
Hiya all. Just to say I am now at home. I still keep feeling a bit nauseous at times but have tablets (yes even more tablets) to help combat it. I also am more breathless than in hospital but I expect that’s because I am moving about more! 🤦♀️ My inr went from 1.3 to 3.9 overnight so I was allowed home, where it immediately dropped to 2.7. But is rising again now. Thank you all for your lovely messages, they kept me going through all of this.
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