I’ve just come home from the Warfarin clinic. A finger prick test showed 8+ then a Venus test showed 13.9. I was given oral vit K then sent home and told to be careful. Any bruising/bleeding go to A&E.
I feel queasy and am having palpitations and feel very tired. (The specialist was informed)
My target is 4 (range 3.5-4.5)
Two weeks ago I was 9.8 and given vit K. I was taken off Warfarin and tested daily. I came down to 7.6 and stayed there.
Last Monday 6.3. Last Thursday 4.3. Today 13.9 (I’ve not eaten or drank anything to cause it to rise)
I wondered how others feel when their INR is so high. To be honest I’m scared to be at home! (Am I just panicking?)
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WendyWoo50
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Hi, I always tell people to trust and listen to their own bodies but reading you post wonder 'maybe' worry and anxiety?
I'm not on warfarin so can't help you there, did you have these symptoms at the hospital and if so, did you report them?
Have you got someone to keep an eye on you?
The main concern with INR that high is bleeding, which is why they have asked you to be careful.
Anxiety can cause palpitations, try and keep your breathing slow and regular, if it speeds up and you start getting pins & needles in the hands please call 999. Panic attacks are a genuine reason to get medical help too, its not just a thing that you can sort out yourself.
Long term, you can't keep going through this high INR, can you see or talk through with your specialist in the next few weeks?
Happy to keep you company over the next few hours. x
Thank you. I did say I reported the symptoms to the specialist. I’ve been having the queasiness for weeks, palpitations all day and feeling tired for days.
My husband is here but has no idea what it means. He doesn’t want to. He is fed up with my illnesses. To him It’s a number that’s it! My mums coming down in a bit.
You have had some great advice/feedback from my colleague HollyHeski . I am not on Warfarin either. Have you been in touch with your main Hughes Syndrome/APS specialist as clearly they need to help you, (the original prescriber of your Warfarin), and your GP, if they can't stabilise you on this drug an alternative may have to be considered. Have you got a family member of close friend who can come and stay with you? It is time to call in a favour or two. Do go back to hospital if you feel ill, as clearly you are in a difficult situation which needs to be monitored if not settling down. MaryF
The only thing I might add here is one of my Hematologists told me that the body does not like drastic changes in the INR quickly. It’s jolting and can make the body feel poorly. Think of it as a Yo-yo effect for the system. I don’t know if that’s right or not...
When I’ve bounced around it’s usually not over 10, and I’ve felt ok.
Is it possible you are spiking because you are coming down with an illness?
This goes without saying... Be extra careful and just rest and relax. No driving or leaving the home.
I have found ondancetran ( Zofran) helps nausea without causing the extreme drowsy side effects of phenergan. Also, at least for me, it does not affect my INR. Can you check with your GP and see what s/he thinks for you personally with your medical history / details?
The only anti sickness I’m allowed is cytosine (because I have an electrical heart condition called Long QT Syndrome and many drugs are dangerous for me) just something else in the pot. I had a pacemaker fitted in June. So I do worry when I feel my heart go funny.
They don’t have an ECG machine available in the Haemophilia Centre at Canterbury Hospital that’s why when it was so high two weeks ago I had chest pains at 9.8 they sent me via ambulance to another hospital ! X
And did they reassure you by doing the ECG, that your pacemaker and heart were ok?
Maybe a call to your cardiologist dept in the morning, for a request for an ECG, You need to be reassured, all this worry will not do you any good or your blood pressure!
Once you've ruled out all the worries, I'm so sure you will feel better. You've been through so much especially in the last year, you need to be kind to yourself.
I want to know if your Specialist who is in charged of your anticoagulation and Warfarin and INR is aware of your present situation and have you been in contact with him or her?
I guess you do not selftest as if that was the case you should have done that already.
I have never taken medical K-vitamin (just greens etc) and I wonder what the next step will be.
I find the values INR 8 with fingerprick and INR 13.9 in the vein is a bit unusual perhaps. Do you usually have a higher value in the vein?
Firstly - above I said: The specialist just said give vit K. Go home. Be careful. Come back Thursday for a test. so yes my specialist is well aware of what’s happening.
Finger prick 8+ was because that is as high as the finger prick tester goes. That’s why I went for a vein check - to find out how much over 8 it was. It came back as 13.9.
Usually my finger prick and vein checks are roughly the same! If I was under 8 I’m sure they would be the same! 💋
Ok. I was not sure as I thought it was the Doctor at the hospital who gave you the K-vitamin and not the Specialist of APS who is in charge of your Warfarin and INR. I now see that the Specialist was also informed. What did he tell you to do?
I know you had a similar situation 2 weeks ago and also oral K-vitamin.
I would absolutely call my Specialist of INR to hear what he suggests. A change of some sort is required. If it is the Specialist or the drugs that may be the question. I know you have other autoimmun illnesses also and it can be difficult with Lupus Anticoagulant and drugs to be taken on special days etc. Something has probably happened in your body.
Something is definitely going on inside me. It’s making me fed up and scared I’m fed up of feeling so exhausted and ill.
It’s my granddaughter’s Christening on Sunday. It’s a big event with 120 family & friends. I’ve been really looking forward to it. But I’ve already had to say- sorry, I can’t do anything to help. 😢
Any positive thoughts to help me through would be great. 💋
What do you want me to say.....? I am trying to help you my way. I have read that you have not a big difference between the vein- and the fingerpric-value and I also know that you are like me Lupus Anticoagulant.
I test at home very often as my INR will otherwise go up or down too much. It also depends on the Specialist how much help he will give you. I know you have a lot of other problems along with APS.
Even if you can not help your family, it should be great for them and for yourself if you can be there and see your little granddaughter´s Christening on Sunday! How many grandchildren do you have?
I know how very positive you are so I am sure you will soon be ok again!
Thank u. I have one granddaughter who will be 1 on 16 May and my sort of adopted daughter has a little one who is 1 on 20 June.
I was very ill last night. Rigour temp 104 shaking barely awake. Today I hurt all over and terrible headache but normal temperature. I went for my Venus blood test to find it’s dropped dramatically to 2.5 so now I’m at risk of blood clotting.
Try to write everything down about your health-issues and INR and Warfarin-drug and other drugs you take( with date and time). Also keep an eye on the amount of greens you eat (also write that down). If I fall under an INR of 3.5 i take a Fragminshot of 5.000 IE (depending on weight etc), ordered by my Hematologist who knows APS and me. That Fragmin-dose is not a strong dose, possible to take twice every 24 hours if necessary. Fragmin has nothing to do with INR. Do not ask me why. Cannot tell you, I just know.
You should have something like that!! What did your Specialist said yesterday when you spoke to him?
I do not know if you have the opportunity to selftest as often as I do. (I know I am spoiled!) You know of course that it takes some time for the INR to climb and that the Warfarin must have around 2 days to react if you change the dose! Be careful with greens now (perhaps not too much), but write everything down as it is impossible to remember the changes in everything.
I am sure you will be fine now very soon. I do hope you can go to your granddaughter on Sunday. Perhaps it is possible.You are among friends there who is willing to help you if needed.
This is APS Lupus. Here is is with a big pretty bow. It is a thief !
But wait? You asked for encouraging thoughts? That’s not encouraging?!?!?
Well.... maybe not! But maybe you need to put a new post up of “how do people cope with feeling low when their APS / Lupus symptoms have them knocked down?”
I know I’m going through something very similar right now... our daughter is graduating from Princeton with her PdD as a scientist. First there is the “defense of the thesis. “ that’s this Friday. We are as a family flying up tomorrow. It’s just the department.
The actual graduation for the school- is June 4th . We are not going. It’s too crowded. I just began Rituximab immune suppression Monday . I cannot get any of my clotting under control.
Her grandparents are going. Her boyfriend’s parents are flying in from Germany for it. They are about to become engaged. His mother is helping me. It is very nice...
After the June 4th graduation the entire family... my son, my husband’s brother, sister, my daughter, the fiancée.. all going to Australia and Peru for to celebrate/ graduation gift.
I’m so excited and happy... but of course I can’t go. I have to have INR draws 3-4 times a week. Of course I feel very sad that I can’t celebrate with my family in my own daughter’s university graduation trip.
So what is the compromise? How do we make the best of a difficult situation?
This has been the question we have learned to ask. Each situation will have a different answer.
In these situations... it’s technology. FaceTime!
Do I in theory wish I could be hiking machuPichu? Of course! Could I? I would die! I’d rather be snuggled on the sofa at home in all honesty! So pics once they are back on WiFi at hotel and a phone call makes perfect sense. I just have to, “ get real.”
It’s just one more thing to grieve... and it’s a big one for me.
This is just one example of a difficult time for me, and an example of how I’m trying to problem solve it. I can potentially see how with modern technology you might implement the same during a flare to stay connected and feel involved and part of the festivities, and still have the benefit of resting at home while you are unwell.
Firstly I see you are from the states by the terms you use. I am also. xeralto would be rivaroxaban.
Not appropriate for very difficult cases for APS. I had the exact same issue. I even traveled to the U.K. and had a consult with Professor Hannah Cohen. She recommended I switch to split dosing ( twice daily) high intensity enoxaparin/ Clexane/ Lovenox in the USA.
Before we tried this I saw Dr Jill Schofield, Denver, CO. USA. She is an APS specialty Rheumatoligist who trained under Dr Hughes. She , however, hates warfarin because is is so tricky and ,”labile” in the system- especially with some people. I’m one of them- but I’m not as extreme as some.
She recommended Apixiban. ( Eliquis) at high intensity. ( 5 mg, 7,5 mg, or 10 mg twice daily depending on patient, ASpS symptomd, etc. )
My dose of Apixiban was 10mg twice daily. It quickly went to 12.5 mg twice daily. It did not work at all. Within a week I clotted with DVT’s, return of seizures, mesenteric ischemic ileus, ( small vessel clotting) small TIA’s all simultaneously.
Dr. Schofield said I was her only patient who had ever failed it, but failed it I certainly had. The vast majority of her patients on it with APS do great. It’s not suited for all patients she told me ahead of time. (I personally have the feeling that if you have very strong neurological symptoms Noac / DOACS in general would not be good for APS patients. This is just my personal theory. This is where I feel the warfarin can handle it better. It must cover additional arms of the clotting cascade . )
I will tell you that my Hematologist told me that if you are not suited for warfarin, Apixiban is a better NOAC over rivaroxaban because it has better,” horse power.”
If you ever have trouble with rivaroxaban, ( xeralto) consider Apixaban,( eliquis) or far better yet, Lovenox, but it must be a split dose ( twice daily) to accommodate the trough.
Although I do appreciate you seem to be doing very well on xeralto, and there is wisdom in not rocking the proverbial boat, so to say, I would encourage you to learn about the TRAPS trial, and the fact that it was pulled early.
There were too many clotting events for APS patients specifically when trialing xeralto compared to warfarin. The report came out about a year ago.
My inclination is that since you in particular are doing so well on a NOAC/ DOAC, I wonder if your Hematologist might think it worthwhile switching you to eliquis. It works on the same arm of the clotting cascade, so it’s literally just switching brands. No bridging... are you on any kind of anti platelet with your NOAC?
You can private message me for details. I do not want to hijack Wendy’s thread. But this is important. I want you and your Hematologist to have this information. This is something I actually know a lot ( a Heck of a lot, sadly) about.
I’d like for you to have the opportunity to ask me any questions you may have about this.
Kelly
Oh-
PS- I see “ spoke” with you 21 days ago... I knew you were familiar!
So you have had a stroke and CAPS. I’m so sorry...
I do want to chat with you a bit a little more in detail. I’ve learned so much about this. Mainly the big benefit of Eliquis over Xeralto.
Another question. Why did your Hematologist not consider high dose Lovenox every 12 hours at 1 mg per kg? This would be better than xeralto right now and would require no bridging at all.
We did shift from Apixiban ( eliquis) to the Lovenox when the eliquis failed and it was better than the eliquis. But I was already clotting and in pre caps so I just felt so sick...
But it was a definite improvement.
( Wendy Woo? Why not the Clexane every 12 hours? You might try? It must be high intensity. Another advantage is you can add anti platelet with a more minimized bleed risk than with warfarin. Also, clopidogrel can be quartered and given in smaller doses to see how it’s tolerated. It can be given every other day. It does take 5 days to reach therapeutic level in system. )
Mainly for Stevener. I would never recommend NOACs/ DOACS. But I’m not a doctor!
I do wonder about LMWH in your particular case, though, Wendy? That’s the only reason i threw your name in that response.
I’m curious only to know what your Hematologists have said about it. You read my account above. Wasn’t as effective as Warfarin for me, but if INR is dangerously erratic...at what point might it be worth a trial? Or has it been trialed?
Hi Wendy - lots of GREAT info from people here -- My 2 Cents worth would be first is i at my old age am still very hyper- and with my MANY dia's problems things set me off - and when that happens i go out quickly - i am on Jantoven {generic Warfarin sulfate } and my range 2.5 to 3.5 . Once and only once have they resorted to Vit K because it is so unpredictable , i did OK with it and it did just what we hoped . I was on 2,400 m a day of Gabapentin of which i just reduced in half 3 day's ago to try to stop the wired crazy mood swings and awful thoughts i was feeling. this has happened before so with me some of the meds i was taking started acting up not sure that is the same with you .I also just had my TPI and MBB injections so i expect when i test my blood on Friday it will be off and also i was just bribing from the injections - so with me there are many things to consider and my ERRATIC INR"S have always been a problem - just throwing this out there and see what sticks sort of thing . Hope things work out well for you C & J here in WET N.H.
Did they not adjust your dosage lower?Have you taken aspirin or ibuprofen? Have you or do you think you might have an infection? That could raise inr. Here is a link to an article regarding infection. pmr.med.uky.edu/sites/defau...
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