Sticky Blood-Hughes Syndrome Support
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Dropping lower & increasing Warfarin

My INR is set at 3.5--4.5

2 weeks ago 4

Last week 3.3 increased W to 19mg/d

Today 3.2 increased W to 20mg/d

Headaches & my body is screaming in pain every muscle hurts. I feel shaky. Random pains in my head not constant just a quick pain then gone for a few hours.

Why can't my INR stabilise? What can I do?

Yesterday I felt too ill to cook so had a jacket pot and cheese no veg/salad so today it shouldn't be lower ??

13 Replies

Hi, the INR can misbehave for many reasons, and it is not always clear why, but you very urgently need to contact your main consultant if you continue to feel like this and are not able to stabilise things. MaryF


Don't forget the warfarin increase will take a couple of days to show up in your INR reading because of it's "half-life".

I understand your frustration though this is why I begged to be put on LMWH and finally got my hematologist to go along.

My quality of life is greatly improved. I am a younger middle-aged person. It was to the point I couldn't have any fun because I wasnt able to relax with what I ate because I wasn't able to figure out what I was going to eat on a daily basis, so I couldn't be consistent weekly then I would try to adjust it eating no vitamin k...Ugh.

Maybe you should switch over, if your Dr will support this. 😉 Good luck


What is LMWH ?


Low molecular weight Heparin.

The same as Fragmin. You can take it instead of Warfarin and you do not have to take INRs and you can eat whatever you want to. It is calculated at bodyweight among other things. Do not know completely.

Warfarin is good but complicated. If you are on Warfarin you should selftest and monitor your own doses and have a lot of teststrips and also LMW Heparin(Fragmin) to take when INR is quite too low. Also a Specialist who is working together with you and helping you. That is an ideal world of Hughes Syndrome.

This last Heparin-shot I mentioned is not very strong and is not used instead of warfarin but as a complement when Warfarin is too low.



I feel totally alone with this. (without u all I would be)

I was a Microbiologist - a scientist so not silly but I'm overwhelmed and just want to give up now


Wendy, 😘Please read my new post


Oh no, please do not say that!

We are so many here and I have forgotten just now if you have got a very good Specialist for all your Autoimmun diagnoses incl Fibromyalgia. The Doctor is so important and I can see that he/she has put you at a rather high INR anyway.

Perhaps you need some other drugs for pain and the other illnesses and they also make it difficult with the Warfarin. It is a fight to get a good Specialist who knows to distinguish between the different autoimmun illnesses and it is so sad that this illness is so rare and so few Doctors understand it.

I am primary APS (no other autoimmun illnesses so far) and can only talk of Warfarin which has been my lifesaver but we are individuals with different "cousins" like Sjögrens, Lupus and even Fibromyalgia can show a hidden Thyroidea I have learnt. It is not easy!

Take good care and stay with us!


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Thank u. I have a good specialist. I had to fight hard (u may recall) for my INR to be raised. When I am 4 I feel human. I can even walk (a little) but when below 4 it's awful.

I have Lupus, Sjogrens, Fibro, 4 prolapsed discs, now I'm told arthritis in hips and lower spine, but.... I have Long QT (sudden adult death syndrome - heart) that's a major problem as many many drugs potentially can cause a cardiac arrest.

I am limited with painkillers, can't take Hydroxyquinine (Pl) - don't know spelling hope u know what I mean. I tried it and it was amazing but I was on the verge of a heart attack so it was withdrawn.

I take dyhydrocodine for pain. Azothioprine, steroids, heart pills, mepacrine, ad-cal, nexium, fibrogel, paracetamol, warfarin. Omega3 oils, vit C, slippery elm (Was on Methatrexate and it helped but felt sick 6/7 days so stopped) I think that's it!!! I hate taking that lot in fact I wouldn't mind if I had a quality of life

I am only 50 married ;he works shifts and is away 14 hours between days/nights. I have a lovely son of 23 (living with his partner) she is lovely too. I have fantastic parents but life is tough. Too tough. X


Well what does your Specialist say? You have a lot of drugs. Could be difficult to handle Warfarin without selftesting at least. Do you selftest?

What does your Specialist say about LMW Heparin? Have you told him/her about your trouble with keeping the INR in range? Has QT (what does it mean?) anything to do with your autoimmun illnesses like Hughes Syndrome perhaps?


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Long QT is a genetic electrical heart problem. Unrelated to anything else. It's not nice to have but we all have it. 😢


Hi Wendy

When I was on Warfarin I used to self test and self manage (self dose) and I also kept prophylactic (for me 5,000IU dose) Fragmin injections to take as well as the Warfarin, if my INR dropped below 3.3 (my target was 4.0).

I am now not on Warfarin but on a therapeutic (for me 15,000IU dose) of Fragmin for life.

Fragmin works in a different part of the clotting cascade and does not work by raising your INR, so no blood tests for INR are required. Also, it is unaffected by what you eat or drink. I would not willingly go back on Warfarin.


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Thank you good information. X

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I hope they can switch you over!


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