Log in
Sticky Blood-Hughes Syndrome Support
9,041 members9,048 posts

Tuesday INR 13.9 Thursday INR 2.5 target 4

Has anyone had this sort of drastic drop if so how did you feel?

I was shivering like a rigour my temp spiked at 104 (40) I couldn’t keep awake. I had a terrible headache.

Now as it’s so low my headache is bad and I hurt all over.

I don’t think my body can cope with much more of this. It’s killing me (or is that over dramatic?)

Has anyone had INR this high?

Has anyone experienced dramatic drops? 💋

25 Replies
oldestnewest

Hi Wendy,

I have the exact same symptoms when in a flare up.

Your INR has dropped so rapidly and so quickly, you've probably become hypercoaguable.

I haven't had an INR that high but my APS flare up symptoms include high fever, shivering, migraine, auras, zigzag lights, acute hot burning pains throughout my body, especially round my kidneys and lower abdomen etc.

I believe its due to the autoimmune reaction, our bodies just can't cope with the increased inflammation and micro clots around our organs and other parts of the body.

Whenever my INR goes too high, the anticoagulation nurses want me to skip a dose, which I will Never do. I know how easily my INR can drop far too low and it would definitely happen if I were to skip a dose.

If my INR is too high, I will reduce my warfarin dose and finger prick test every day, to monitor my bodies reaction and to see how quickly my INR is dropping.

Depending on the finger results, I'll adjust the warfarin dose down further if my INR isn't going down enough, or up a bit again if it's dropped a bit too low, like to my lower end of my range. I do this until my INR is within range again.

Has your fever subsided yet, or has paracetamol kept it down? That is a very high temperature and if paracetamol isn't keeping it down, then you should call 111, or even 999.

During my last episode with high fever, it was 103.5, I was told I should call an ambulance if paracetamol didn't lower my temperature!😯

Claire x

Ps let me know how you are please x

1 like
Reply

Thank you Clare for your lovely reply.

Basically two weeks ago I had a 24 hour sick bug that was doing the rounds. But I couldn’t keep any meds down (including my immunosuppressant drugs and Warfarin) or eat for 4 days. When I went to Warfarin Clinic I was having head and chest pain and my INR was 9.8 they called an ambulance and sent my to A&E

I missed a dose. Had vit K. Retested 8.9 Then had 1/4 dose. And the next day I was spot on at 4.2.

Took my normal dose - next day 7.3. Missed a dose 7.3 again.

Missed another dose, Then 4.3 perfect. The nurse kept me on the same dose and retested 5 days later - 13.9. Vit k again. Missed 2 doses. Then 2.5.

These wild swings are horrendous.

The 13.9 and vit k was Tuesday missed Tuesday and Wednesday Warfarin then Thursday 2.5. I actually felt good on Tuesday (but scared in case of a bleed) yesterday a headache came on about midday and got worse and worse. Then in the evening I felt queasy and was very cold 1, 2, 3 then 4 blankets finally warmed me and the heating was on 24. I thought it was because my blood was so thin. Then I was shaking. Mum came to check on me. She took my temperature, which was 40.

She put me to bed and I slept well. This morning I had normal temperature and the symptoms of a low (hurt everywhere and banging headache) I had a shower, got dressed then had to lie on my bed for an hour with Exhaustion). I had to go to hospital (45 mins away) for my Venus test then wait an hour and half for results. I felt low and made a bed out of the chairs and coffee table and dozed.

I could not believe it when she told me I was 2.5. Last time vit k and missed dose dropped me by 0.9. This time by 11.4.

I was told to go to A&E but told them I am too ill to sit on a wooden bench for hours and hours! I walked out of my consultation in tears saying I’d rather go home and die than face sitting on a wooden bench in this agony. I couldn’t even sit up!

She said take your normal dose and I’ll see u next Thursday! Plus Clexane. I lost the plot. I told her that was ridiculous - if I could swing that much in 2 days what the hell will I be in 7 days? So now I’m going Monday!

I’m not being dramatic when I say I really feel my body can’t take this any more. It’s killing me.

I don’t know if I should take Clexane I usually do when 3 or less. But what if I’m bouncing?

Sorry for the rant - thank you for answering me.

1 like
Reply

I just have to say that if you ever have a temperature of 40 again, your mum should call an ambulance, it's dangerously high for an adult!

If this happens again, even if your temperature is only at 38, it is still dangerously high and I speak from experience. Make sure that you take paracetamol to help lower your temperature and even tho you may be shivering violently, don't wrap yourself up to try and keep warm, as it's very important to lower your temperature!

If your temperature doesn't come down, call 111or 999.

I don't think you're being dramatic, my APS flare ups have been brutal!! I've been so ill and in so much pain, I wanted to die!

During my last flare up, I was so exhausted and weak I couldn't stand up and I was convinced I must be having a bleed! I wasn't tho it was because my INR had dropped below 3.

I personally don't believe the way you're being dosed is right, not when you have APS. Are you being treated and dosed by anticoagulation nurses that understand APS?

An INR between 7-9 is not ideal but it's not crazy high. I would have perhaps halved my dose, then checked my INR, if not lowering enough I would maybe half my dose again and then take a slightly reduced dose until at top of my range.

The yo-yoing of your INR, created by skipping doses and vit K injections, would have been such a strain on your body, so I'm not surprised you went into a major flare up!!

When you're trying to get your INR under control, you need to test every other day, maybe every three days max, five days far too long. You may have reached your ideal INR of 4.2 but it's important to make sure it's stable and so I don't believe the nurse should have said come back in five days.

Are all the INR results you've mentioned vein results, or are some Coagucheck finger results? If done by finger prick, then they're unlikely to be accurate because when we flare up we produce antibodies and they interfere with the results of the finger prick.

Do you have a Coagucheck self test machine? If so you could see if it agrees that your INR is below 3. If so, then perhaps clexane is a good idea. If you're truly too unwell to go to hospital for vein tests and it definitely sounds like you are, ask your GP to get the district nurses to come and take a vein INR at home. That's what I have done.

Who is actually managing your APS? Are you with a local haematologist? Xxx

1 like
Reply

Well said!

1 like
Reply

You’ve put this very well.

I have a couple of comments to add.

Warfarin can take between 2 to 4 days (or 2 to 5 days according to another article) to fully affect your INR. I think that’s why they leave you 5 days between tests. So it would be a good idea to try to determine how quickly your INR reflects the change of warfarin. Easier if you use a home testing machine but if you know you react more quickly than 4 or 5 days you can tell them to test you sooner than 5 days.

Some of us find that our INR comes down more easily than it goes up so something else to watch out for.

Coaguchek XS only works up to an INR of 8.

Prof Hughes always said never miss a dose and my anticoagulation clinic have actually told me the same thing. I don’t know if this would apply with an INR of 13.8 though as that is very high. I self test but liaise with my anticoag department who dose me. They override the computers instructions for changes of dose if necessary as they understand that APS patients can react very quickly to changes in dose. It would be a big help to you if you could get your dosing people to understand that we don’t react the same as others on warfarin and to look into this so they can dose you more safely.

I hope you are feeling much better now and that you can stabilise your INR now. Xx

2 likes
Reply

I always learn so much from this site, so thank you for the above info. 👍

It's really interesting that Professor Hughes said never to skip a dose.

I just discovered not to skip doses myself because it always has a massive effect on my INR. In the past, I was told to skip a dose when I had an INR of 7 and ended up with an INR of 1.8!

I didn't know I had APS back then and I was always battling with the haematologists and anticoagulation nurses, about whether I should skip a dose if my INR crept up too high.

I definitely find that my INR drops much quicker than it goes up. I thought perhaps this is because once it's dropped too low, we've begun clotting and so trying to get the INR back up again is slower because the blood is now very sticky and clotty.

I personally think "clotty" should be made an official descriptive word for those of us with APS, as I feel clotty right now and an awful lot of the time!😉

I was considering mentioning the half life of warfarin but I've never been completely convinced about how long it takes for warfarin to be absorbed.

I've been told by the anticoagulation nurses, that warfarin takes 48 hours to register in our blood but I'm not fully convinced about that. I think you're correct in saying that it's different for everyone.

Having said that, I still try to work out my ongoing warfarin dose, by what affect the dose from the night before may have on my INR, if that makes sense?

The anticoagulation nurses who know me well and are knowledgeable about APS, understand that I can't make big adjustments to my warfarin.

I find it best to check my INR every other day and adjust my warfarin down slightly by 1/2mg to 1mg if it's creeping up too much, or to add 1/2mg to 1mg if my INR has began going down. This is the only way I can prevent big swings in my INR, more so with downward swings, as they are far more frequent than a high INR.

Like you, I'm lucky that the anticoagulation nurses who dose me, understand this and trust my judgement.

I wholeheartedly agree that it would be extremely helpful if Wendy could get the anticoagulation nurses who dose her, to understand that APS makes our blood act differently, when it comes to skipping doses, or having vit K.

I wonder if there are any medical articles online that Wendy can print off to share with them? 🤔

2 likes
Reply

IMHO, if your temperature is 104 you should have called an ambulance. You can’t make assumptions about a diagnosis. Let the doctors!

Wishing you a speedy recovery!

With good wishes,

Ros

2 likes
Reply

Hi, with symptoms like that, you must call your GP or 111, for an urgent telephone triage, or go to the hospital, it is not safe for you to sit at home playing guessing games. I know it is a bore to go and seek medical help, but you must do so for your own safety. Let us know how it all goes and what they have to say. MaryF

1 like
Reply

I understand what you are saying Mary. But I chose not to go because our hospitals are dire. I don’t know what yours are like?

Last time I was tipped of the ambulance trolley onto a hard wooden bench. I sat there for hours and hours.

When I got through to cubicles there was another wooden bench to sit on.

I ended up lying on the bench with my feet up the wall and my head on my mums lap. Thank god mum had a blanket in her car as I lay shaking. My body hurt everywhere. I was in agony. As I was on the bench all night long. It was such a horrendous experience that I vowed never to go there again.

Reply

I would still go, and if you are unhappy with the service, complain via PALs with the help of your mother. MaryF

Reply

My god Wendy your A&E experience sounds horrific!!

I've just checked my diary and when I had the same symptoms as you, my temperature actually went up to 39.5, I'd just forgotten it had gone that high!

Like you, after multiple truly horrendous experiences in A&E, I didn't want to go to hospital and so refused an ambulance when 111 said they must send one.

The next day I spoke to an out of hours doctor and he said, "you do realise you have all the symptoms of sepsis!"

These words made me realise that I should have gone to hospital the night before!😱

Thankfully I didn't have sepsis but if I ever have a temperature that high again, I will call an ambulance.

Did you have a temperature when at the hospital? 🤒

Reply

Thank you for your words. It’s such a dilemma isn’t it. I’m clever. I was a scientist. But I can truly say I’d rather die in a comfy bed at home than on a cold hard bench in A&E. I’ve told my family to write to the nationals if I die, with the title:

“She died because she felt too ill to go to A&E”

I sound a right stroppy so and so - actually I’m the complete opposite but I’m a person who has been pushed to the limit and who can’t take any more.

See my reply below 💋

1 like
Reply

I've just responded to your reply below but I've thought of something else. When I'm flaring my temperature can also fall too low, as well as go too high, so always check your temperature when flaring, as a temperature that's too low, is also very dangerous. 😯

Reply

I’ve thought long and hard before replying to this post, and do remember we are all so different. In some ways I’m playing devils advocate.

If you have a temp of over 102/39 do not wrap yourself in a blanket even if you are feeling cold. This will increase your temp to a higher level. Also seek medical advise ASAP there are too many things it could be to mess about with, if advised to go to A+E then go and get things sorted. They can give you the right pain relief and fluids cos there is distinct possibility you will be dehydrated.

I’m not a great lover of being given VitK and most of the time will refuse it, can take two weeks to get out of your system. This is according to a consultant I saw when first diagnosed. The only time I have taken it was when my INR was above any lab range (22+)

I worry more when it drops for example on Tues INR was 2.1 by Fri was 1.6 I had to have a Squamous Cell Carcinoma removed so stopped Warfarin for 3 days and bridged with Fragmin. On Fri took and extra mg then back to normal dose and retest Mon, by which time INR should be back to normal.

The less you mess about the better it is, and too much testing can be counterproductive if you tested in the morning and again in the evening you would prob get two different results. In some ways it’s a snapshot of what’s happening.

I will admit I have a laid back approach but having been diagnosed some twenty years ago has served me well.

These are my thoughts some will strongly disagree some won’t so apologise if I have upset anyone.

J

1 like
Reply

Thank you for your reply.

I didn’t realise I had a temperature I just felt cold and assumed it was because my blood was so thin.

I won’t go ever to A&E again unless I’m unconscious. I spent hours and hours in agony sitting on a wooden bench. I was in such a state when I got to cubicles that I lay down on the bench with my feet up the wall (on a drip because my kidneys weren’t working). I was so uncomfortable. If I could have had a comfortable chair or bed - of course I would go.

I’m not a silly person but I am really unwell before a flare like this. I also have 4 prolapsed discs, lupus, Sjogrens and Fibromyalgia and even on a good day I’m too ill to go to A&E and face the agony of those benches.

I went last time by ambulance and was transferred from the trolly to a bench 😱 it was horrific. I could hardly sit up I was so ill.

Our hospital waiting rooms and cubicles are the most uncomfortable places. Opposite me was An old man on oxygen with chest pains. He sat on the bench for 24 hours. No blanket. No chair. No food. No drink. Vets would be struck off if they treated sick animals like that. Wouldn’t they? Scientists treat the lab animals with more care and compassion.

So back to APS

I agree that they mess with the doses too much.last week I had Vit K Warfarin Aspirin & Clexane all in 2 days. It can’t be good for the body.

I don’t self test. I go to the hospital once a week unless I’m way out of range when I go twice a week

I think the INR changes during the day too. Some days I feel the affects of it changing as the day moves on. 💋

1 like
Reply

I feel exactly the same about my INR changing as the day goes on, I'm so glad you said that!!

I was actually considering putting up a post about it.

I take my warfarin at 6pm and by that time in the evening and for the next few hours, while I suppose my body is absorbing it, I have multiple APS flare up symptoms!

Right now my lower abdomen, the right kidney area of my back, both groins, both thighs and calfs (following the path of my incompetent veins) are hot and throbbing in acute pain.

I always get a bubbling sensation in my legs, groins, abdomen and right flank, like the blood is struggling to flow. My autoimmune face rash also flares up😳 along with the above. I'm in so much pain by the early evening, that I don't know how I'd cope if I didn't have lidocaine patches, that I can apply to my abdomen to help numb the pain.

This happens to me every evening, if my INR is below 4!

Perhaps we should put a post about this on Sticky Blood, to see whether others suffer in the same way 🤔?

I'm completely appalled by how you and that other poor gentleman were treated in A&E, do you mind me asking what hospital you attended?

Please call the CQC and report your experience, the CQC details are on my recent post. If you have it in you, then file a complaint, or even write to your MP.

We all know that the NHS is beyond struggling and that A&E is a very dangerous place to go nowadays, especially if you have a rare but life threatening condition like APS!

A&E departments are so understaffed and often run by the most junior of doctors, who are not knowledgeable when it comes to rare conditions like APS.

When I've told the haematologist who looks after me, about the acute APS flare up events I regularly have, ie the symptoms mentioned above, multiple stroke symptoms, or when I know I have clots in my legs and groins etc (like right now), he tells me I should call an ambulance and go to A&E.

I've tried explaining to him, what a waste of time it would be to go to A&E because I'm already on warfarin, so what else can they do to help me??!!

Like you have rightly said, going to A&E is actually more likely to make us even worse!! 🙄

Reply

Omg I’m with you with everything you say. I’m definitely writing a complaint when I don’t need every ounce of energy myself.

I have the same symptoms when under 4 often a sore throat too. I often think I’m getting flu but in a couple of hours it’s gone.

On my last visit to A&E I told them the immunosuppressant drugs I’m on and asked if I could go in a side room. No!

Then a mum wheeled in her 20 year old daughter who had hurt her leg. They were followed by her 16 year old ‘green looking’ sister. The sister sat down and vomited 🤮 everywhere. Turned out she had been home all day with a tummy bug!!! She was old enough to stay home alone. The staff asked her to leave and her dad came and took her home!!? Too late she’d spewed her germs across the room. That’s what we r up against!!! I was terrified as it was a simple 24 hour sick bug that started all of this 😢

At my appointment on Thursday I tried to explain how I’d felt the night before (when I was dropping). I asked her what’s going on. She got really cross and told me she was there to take blood and she couldn’t answer my questions. I said well shouldn’t I see my specialist then? To which she replied: I will talk to her!

That’s no good is it. She didn’t know what I’d experienced I need to tell her.

She then said: “ take ......mg and Clexane and come and see me in 7 days! If u r feeling poorly go to A&E”

I flipped “ with all due respect that is the most ridiculous thing I’ve ever heard. Two days ago I was 13.9 now I’m 2.5. We have no idea what will happen in 7 days!”

She rolled her eyes and said “well if you want you could come Monday!”

Of course I don’t want to travel an hour wait in the waiting room for an hour and then travel home but I think it’s a necessity I do!

All she was interested in was sending me to A&E. But she didn’t let me explain that I am bedridden in agony when under 3 so at 2.5 this is normal. If she grasped that simple fact it would help.

“I’d rather go home and die than go to A&E and sit on those wooden seats for hours. I AM TOO ILL TO GO TO A&E!”

I became so frustrated and Bust into tears and stormed out. (leaving mum who came with me to finish my consultation!). I stood against the wall in the corridor breaking my heart. Doctors nurses patients and visitors passed me by no one asking if I was ok. I felt so let down and alone.

This is such a lonely condition.

PS my brother has rheumatoid arthritis, which is well controlled at the moment 🙏🏼 But interestingly he often says when he gets in from work “I feel terrible I think I’m getting flu!” Maybe it’s an auto thing?

I’ve finished waffling now 💋

1 like
Reply

OMG that's terrible, you have every right to vent, the way you're being treated by your local hospital is appalling!

Is the nurse you see an anticoagulation nurse, she seems to have no idea about how APS should be treated?

Its awful that you have no support. I'm under St Thomas Hospital for my APS and I've shared on here about the nightmare I've had with the doctors/consultants there however the anticoagulation nurses are lovely. They are willing to trust my judgement on dosing because they understand that APS kind of has its own rules and so the regular way of dosing warfarin just doesn't work for those of us with APS.

I've had the same thing happen to me re the crying. When you're genuinely that unwell and in pain, it does eventually become too much and inevitably, when no doctors or nurses are listening to you, you will become so desperate and that's when it's impossible to hold the tears in. When you end up crying however, you're then get labelled as depressed or anxious, you just can't win!!! 😟

I get the sore throat and the flu like symptoms too, I think it's definitely an autoimmune thing. Xx

Reply

I am sorry but as we are so many members here I forget each individual. I have focused on you the last days now and I wonder why it is impossible for you to selftest as that would be a great benefit for you.

1 like
Reply

I assume I have to have the permission of the anticoagulant specialist to prescribe the Warfarin is need and to assist in dosing when swings occur. So I can’t even buy and use it myself can I?

It would be expensive to purchase the test strips but I could do that.

I have asked numerous times if I. An self test to which the answer is always :”when you are more stable we will look into that but with you this unstable no!”

😢 seems I can’t move forward

Reply

First of all I hope you feel better today and I hope the Christening of your little babygirl went well.

As i live in another country (Sweden) where we have other rules and charges for healthcare I understand that you have other difficulties than I have.

I have a Hematologist who knows me since 15 years and therefore I can take care of my own selftesting (I know I am spoiled!) but I am triplepositive with very high titres all the time incl. Lupus Anticoagulant so it is quite a job I am doing. We must have a Specialist behind us who trust us and is helpful and understands how tricky APS is.

Reply

Hi, I appreciate your concerns and experiences with A & E - I too have had a bad experience, with knowing I had a new clot & nobody able to confirm by doing a scan, I insisted seeing a registrar or consultant who only confirmed that doubling up my clexane was the only answer!!

Its easy to complain about treatment but if you have new symptoms or more severe or prolonged symptoms you should still go to A & E!!

Yes our NHS is stretched but you still get the best service they can provide, especially if its an emergency.

I've also had excellent treatment within an A & E department - we can't complain if we dont go in the first place?!

1 like
Reply

I’ve been numerous times. The treatment is always second to none. Staff are all amazing. I don’t even mind the long wait. My issue is the fact that comfortable seating has been removed and the hardest most u comfortable wooden seat/benches put in their place.

It’s not the wait - It’s the absolute raw agony I’m in whilst waiting

Last year cubicles had comfy (ish) high backed padded armchairs but they have all been replaced by hard wooden seats joined together like benches but with curves so if you lie down there is ridges poking in your back or side. No good for those of us who struggle to sit in comfort anyway.

If I was having a good day and decided to just go and sit there in A&E (which obviously one wouldn’t this is just an illustration) I would be in raw agony before long and would spend days trying to get back to where I was.

I don’t understand why the comfy chairs have been removed- I will be addressing that as soon as I’m well enough.

Reply

I’ve been unfortunate enough to have had 8 visits to A+E in the last year, non APS related, via ambulance, I’ve always had good treatment. By visit 8 knew the staff quite well!! I’m not planning to go again in the near future now the docs have sorted some decent palliative care. Though I’m not thinking of departing this mortal coil just yet!!

1 like
Reply

Good to hear that!

I’m pleased you have had such good treatment.

As I said above I cannot fault the treatment it’s the agony caused by the A&E department furniture.

Keep well 💋

Reply

You may also like...