And the saga goes on...
Today out patients finger prick reading 8+ (X 4)
Vein reading - unobtainable (X2)
They resorted to the old fashioned method using a bath ? Actual reading came back as 16.8
Was given 2ml of vit K and sent home.
Vein sample to be taken tomorrow.
Anyone else had readings that high?
To be honest I’m scared. I was kept in 10 days ago with INR of 13.0 Now at home with 16.8 ?
10.5 my highest.
My doctor has a patient with 15 once.
Just be calm and still.
You are a closed system. As long as the closed system remains closed...
No popcorn, no salad with pokey stems... no roughage.
No step stools or ladders. ( no foraging to top of armoire today!)
I’d be very gentle.
Reversals work in 20 min my Hematologist told me, so I wonder what the equivalent is now.
What’s this bath?
Wendy,
I was told by my specialist recently that Fondaparinux is being used in difficult to treat APS cases. ( especially those with a lot of neuro symptoms.)
It’s a once a day injection, and they do not sting.
It’s a chemical equivalent of heparin.
It might be worth asking your specialist about.
I am on Fondaparinux, have been for about a year after getting numerous clots on every single other forms of anticoagulation. So far so good! I am under Prof Hunt’s team at Guy’s and St. Thomas Hospital. Feel I can finally relax a bit, hope I have had my last DVT.
Thank you for sharing, Helen.
Yes, my APS specialty Rheumatoligist at London Bridge shared this info with me because I clotted through everything also.
She told me she shared a patient with head Prof . at Guys and St Thomas who reminded her of me. This patient was a young woman who had suffered two strokes.
( so really, far worse off than me. My neuro issues are seizures, horrific migraines, Livedo Reticularis and Racemosa- stroke risk- TIA’s and optic nerve atrophy)
I have had 12 upper extremity arm clots in3 years and 4 months. I clot if INR is less than 4.8- I inject with varying amounts of enoxaparin if INR under 4.8. ( I only inject 20 mg if it’s 4.8, 30mg if it’s 4.5, 4.0 or less it’s 40 to 50 depending on severity of symptoms. If face and limbs tingling and aphasia, I might do 60 at 4.0.
I weigh 111.
This is my highly customized bridging plan . No anti platelet with INR this high.
I had severe itpp in infancy.
Currently on Rituximab.
We might consider switching to fondaparinux.
Has it helped your neuro symptoms, if you’ve had any? Migraines?
Hi Kelly, I have such a complex medical situation that it is difficult to weed out what’s causing what - with many diagnoses having overlapping symptoms. My main diagnose is Ehlers-Danlos Syndrome and at 55 years old I have a long list of secondary conditions following this. I have had severe migraine since I was 8 years old and used triptans since they came on the marked (1994), but it was not until I started with Topiramate in 2006 I felt I got some control over the migraine. However, meeting a wonderful neurologist who put me on max dose of Topiramate 3 years ago (400mg/day) gave me my life back and although I still have migraines and still use triptans, the attacks are mild and no longer last for days like they used to!
None of the anticoagulation therapies have made much difference to my migraines, but I got even more migraines the 3 weeks I tested out Rivaroxaban, I had migraines every single day for 3 weeks, although that was back when I was still on therapeutic dose of 100mg/day Topiramate.
As for how much APS is causing my neurological symptoms and how much that is down to EDS - no one can give me an answer to that as many of the symptoms I am having are the same.
I am triple APS positive, have had 1 PE and numerous DVTs, I struggle with scarring and reflux in my legs from all the clots and the pain makes it difficult to keep my legs down when sitting despite having used compression tights for the last 12 years. I am housebound and try to do a slow walk in my garden every day, using my crutch, but use a wheelchair with leg supports when I have to leave the house for medical appointments.
Helene
Gosh an I’m sitting here feeling sorry for myself. Bless you. Lots of love n light n hugs x
Gosh, 'sit tight and carry on' etc. Presumably as it some down they will continue to monitor your progress. It will be interesting to see what tomorrow brings, with regard to the next reading, watch this space etc, and best of luck. MaryF
Me? Never so high. But remember: serious bleeds for us APSers is very rare. Stay calm, avoid fall potentials and --do you have this channel in the UK? -- watching the Golf Channel is my way of boring myself into calm.
I was 16 once. My INR nurse told me to steep 5 bags of green tea in 1 cup of water, drink it and skip my Warfarin that day. A week later I was back to my usual 1 while taking 40 mg of Warfarin. I did not do well on Warfarin.
More importantly nothing happened. I was fine.
Oh these were vein draws. I was in France. It's what is done in France.
Excellent! Thank you!
For clarity,
In what time frame did your INR return to normal? We’re you drawn by vein the next day? Two or three days later? Or are you saying you waited a week?
It was a week later. No one was excited. It was strange since I struggled to raise it to a 2 with increasing dosages of Warfarin. And this one week it was 16. 🤷♀️
Surely that would have given u a massive caffeine hit!
I do not even remember. I was not on any Facebook groups or support groups so honestly I was not worried at all. I just thought - oh, yikes! The nurse and my doctor Were calm.
Wendy I do think there are some disadvantages of being in the support groups. One being too much information and misinformation. I'm on Xarelto now. It works for me. It's is much less dramatic than when I took Warfarin. I am sorry Xarelto does not work for many APS patients.
I do think this support group is the best as far as good information and kindness.
I hope you feel better soon!❤️
It’s so true! And to be clear: Raw 57 has a genetic polymorphism VOCkr1 that disallows her body to metabolize warfarin. She was on 40 mg daily and still could not raise her INR much above 1. Silly.
So there is a sound and medically tested reason she is on rivaroxaban.
Is it ideal? Perhaps not.
Is it working for her?
Better than 1.silly!
Fingers crossed!
She and her doctors cal also look at a Apixiban, and at higher doses. She and her doctors can look at fondaparinux. ( have a look at dialogue between me an Helen on this thread, Raw57. )
We take data, tuck it away , and discuss with doctors as needed.
That’s the beauty of support groups that are well informed .
I am needing information and confirmation myself on fondaparinux. Helen has helped.
Thank you all for contributing in such SUPPORTIVE WAYS! ❤️❤️❤️
Thank you.
Keep calm and carry on!
Many years ago I had a INR in the low twenties had some VitK and was sorted, I was kept in hosp for a couple of days but didn’t have any issues with bleeding.
Yet a couple of weeks ago had an INR of 10.8 and had a bleed I coughed up blood for two hours tho to be fair I was on antibiotics
Love and hugs
J
Today’s INR 5.4. So at least I’m safer now! Thank you all x
Thats great, now how are you feeling, any symptoms?
I just said to my friend. I feel odd. I can’t say why or how. Felt faint and bit dizzy after dinner. I was emptying the rubbish bin and thought I was going to pass out.
I hurt the same as always but my headache is only a 1 out of 10 ;virtually unheard of) but I feel sort of shaky inside. I suppose I’d say I literally feel out of sync.
I have been lethargic all day and even got my son to cook dinner tonight.
10 days ago I was 13. Then after vit k next day I was 3.5 (too low for me) then 4 days later 4.4 then a week later 16.8 (yesterday) now 5.4
Sorry to go on especially when so many of you are so much worse than me. But my fight is going...
I think these drastic changes in the composition of my blood is killing me 😢
I feel I’m losing my grip and want to give up. I’ve been diagnosed with depression and cry every day - just cry sometimes with no specific thoughts in mind - but due to my having Long QT (heart condition) there’s no treatment I can take. Am awaiting counselling.
Love confused, scared, exhausted, depressed Wendy -Woo 💋
I am so sad you are feeling this way. I do understand though... we long to be as we once were and this disease is like the Devil - taking what it wants and leaving us to try and regain ourselves. Continue to strive we are all rooting for you🥰
Wow I am glad things have improved. Thanks, Kelly in Texas, for some great advice.
I hit 6.7 once. My hematologist at the time thought it was fine, because my INR was very erratic and she thought too high, for me, was better than my usual too low (!), but the anticoagulant clinic was having heart failure. The clinic told me to skip 2 doses, but I did not do it, and at the next test it was more in range. Funny though, I had that same "shakiness" that you describe WendyWoo. I still get it sometimes, but I'm not on warfarin anymore.
There is so much still is unknown about this disease.
Inr
INR soars with antibiotics
A new recommended INR?
Self testing inr
