Sticky Blood-Hughes Syndrome Support
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Good Early Surgery Outcome but frUstrating Warfarin management

Sorry it's taken a couple weeks to write an update on my one level spinal fusion but here it goes: my GP organized my presurgery bridging using LOVENOX. Felt like kind of a joke as my INR was only 1.5 ten days prior to surgery (my therapeutic range he agreed on is 2.5-3.5, which I only hit once since my DVT in the beginning of December). Leading up to surgery, about 12 hours after stopping the warfarin and 5 hours after starting LOVENOX injections (which he had me do once a day) my INR was just 1.1. Certainly can't blame that on stopping the warfarin as it is supposed to stay in your system for a few days and my next dose wouldn't normally have been due until an hour after the blood draw. So at that point GP just kept me on once a day 80ml lovenox dose, taking the last one 48 hours before surgery. Surgeon was concerned that with a therapeutic inr range of 2.5-3.5 the warfarin wasn't stopped early enough but quickly realized that wasn't a worry since I've basically been under coagulated all along.

Post surgery they started me on warfarin about 12 hours after surgery (let's call it day 1), lovenox about 18 hours after surgery but skipped the warfarin on day 2, then resumed both on day 3. Everyone did the proverbial pat on the head - we've got it handled when I suggested the warfarin should have been restarted earlier as it takes longer to build up and start working. This was to no avail and my INR a week after surgery was just .5. So on my end I've been moving as much as possible and will be attempting to get a referral to the anticoagulantion clinic in town today (have INR check scheduled at GP office this morning) in the hopes of a little better, more aggressive management.

The good news is my INR was plenty low on 1/29 for the back fusion which according to the surgeon went as well as could be expected. They did Ted hose and the compression boots while in the hospital and despite issues with pain control complicated by use of prescription opoid use prior to surgery leading to tolerance the surgery itself and initial recovery have been great. Hardest aspect of that is following the no bending, lifting, twisting restrictions (twisted in shower reaching for shampoo and have been paying dearly the last few days). Regardless of the difficulty with pain, which is now mainly muscle with the incision pain nearly gone and virtually no bone pain since surgery, I'm walking a lot and trying to keep busy with small projects my jailers, oh sorry - I mean family will allow :)

Needless to say the stress level for myself and hubby have been extremely high both before and after surgery having concerns that the anticoagulantion is not being managed properly and feels kind of like being forced to play Russian roulette.

When I see my rheumatologist in the beginning of April I will be asking for a referral to an APS specialist which will be quite a distance off both in time and distance I'm sure.

Sorry for the length. I do hope you're all doing well and thank you for listening!

6 Replies

What I have understood is that you are Lupus Anticoagulant and that your Coagucheque-value is not the same as your lab vein value. That is exactly like me. You had a discrepence between the the two of an INR of 1.0. The higer INR the higher difference between the two (that is what I have).

I do not understand. Is your INR not in range at present after the surgery? What I understand is that it is important that your INR levels are in range. Should perhaps be over 3.0 or 3.5 (your therapeutic value is 2.5 - 3.5).

I selftest and it always differ around 1.0 between the labvein and the Coagucheque value. It is the lab vein value that counts according to my specialists and so I have learnt also.

I do not know if I could help you with this. Come back if you like.

Kerstin in Stockholm


Your experience plays to my greatest fears about any surgery. I have already refused to have a liver biopsy on the day of admission as no one had bothered to explain to me that I would have to be without anti-coagulation for it. When you were on heparin and warfarin you would have been safe as heparin anti-coagulates without affecting INR. What should happen is that you stay on heparin until your INR is high enough for you to stop it. Also when you are not in range on a 'normal' day if it is below 2 at least you should be allowed to inject heparin until it goes up to therapeutic range - I would like to inject when it goes below 2.5 or even 3 but my rheumatologist won't agree - I am seeing APS specialist to discuss. Glad your surgery went well - you could have done without the extra stress!


I'm glad your surgery went well. And I do hope you get the therapeutic INR straightened out. I wonder if your life would be easier on an injectable instead of warfarin? Seeing an APS specialist may come with a cost of money and travel time, but is likely to offer a big profit in symptom and stress reduction.

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Glad all went well. I would agree about the LMW heparin V warfarin debate. If you cannot stabilise your INR the risk in my eyes would always be to high and that its better to inject.


Thanks all for your thoughts. Seems like my clinic may have finally clued in a little as they're having a "chronic disease specialist" nurse take over my INR testing. I am still moving ahead with getting a different primary care doc (thinking internist) so I can get a referral to the actual "anticoagulation clinic" which is nurse run in our town. This way I would have only one doc setting the protocol for the nurses who would make dosing adjustments as needed (hopefully educating them all initially on the issue of coagucheck versus vein result discrepancies instead of having a different doc decide on a new protocol each time I'm tested). If it was always my chosen "GP" things would possibly be better but the state employee clinic is basically a "doc in the box" so the doc who deals with things like INR med adjustment is simply the first one the nurse can locate walking down the hall. Obviously not the best for continuity of care. Thankfully, after surgery I'm finally feeling more equipped to change docs, etc.


I hope you can get an APS-Specialist to talk to as soon as possible! Having APS with Lupus Anticoagulant can be difficult in itself.

It is a shame that when we have this illness we must be our own lawyers Always active, which is exactly what we do not feel like at all. We do not like a fight and we need help. But we must fight!

It is very important that you can keep your INR in range actually. Good luck!



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