Warfarin and Spine Surgery

[traveloasis]

Three years ago I had multiple PE's while on low dose of warfarin (INR was found to be only 1.0) I was on the warfarin for previous DVT's. I was then diagnosed with having Lupus Anticoagulant. I am being treated in St. Louis, MO by an oncologist who says that LA is not the same as APS or Hughes Syndrome. Is he splitting hairs or is he right? Does anyone have a clarification for what he might have meant? While we were experimenting with Eliquis and Xarelto I had 5 strokes 3 one time then 2 another time about 2 weeks apart. Since then I have stayed exclusively on warfarin

The reason I am pursuing this issue is because I take 6 mg of warfarin once per day in the evening after a meal to try to maintain an INR around 4.0. I get my blood drawn every 2 weeks or sometimes sooner if the INR gets to close to 3.0. In spite of this INR level and warfarin dosage, I am symptom free. I have had an INR of 9.6 and still no hematomas, gum bleeding, slow healing time, and no excess bleeding of any sort. I have had 4 knee arthoscopies with no more bleeding or any more complications than any other patient as verified by the surgeons. I have had a MOHS procedure on my forehead, again, with no excessive bleeding. I just 3 months ago had a total hip replacement while on a bridging agent called Louvenex which started a week before surgery and then on that same evening started right back on my normal warfarin dose.

I now need spine surgery for extreme spinal stenosis, a bulging disc, and facet hypertrophy. I am getting pushback from a spine surgeon who says he won't operate on my spine even with a bridge of any sort. The spine issue is progressively getting worse by the week to the point that it is affecting my quality of life. The pain is extreme sciatic nerve pain that often causes loss of muscle control in the leg. When badly aggravated, the entire leg, small of back, and middle back are in extreme debilitating pain. Even when prone in bed, flat on my back, sometimes the slightest movement can cause the leg and back pain. The reason for this last paragraph was not to elicit sympathy but rather to make the case for the need for the back surgery.

Finally, getting to the point, here are some questions I have. I hope that others on this forum might have similar experiences and perhaps even answers.

Is being asymptomatic for high INR while on warfarin common for LA/APS/HUGHES?

Is that oncologist correct that my LA is not the same as APS and Hughes?

If I cut myself while working in my shop, why does the bleeding stop almost immediately when I dab (not compression) at it or lick the blood away?

I have never had any black and blue marks (hematomas?) at all even when the INR was 9.6, why is that, if I am on 6 mg of warfarin? Is that common for LA/APS/HUGHES?

Has anyone ever had brain or spine surgery while on a warfarin bridge? Is there something special about those types of surgery that preclude the use of a bridge?

I appreciate your reading this far and apologize for being so wordy but I wanted to be thorough. Do any LA specialists follow or monitor this forum? Are there any specialists in St. Louis area?

Thanks for any advice or answers that anyone can offer. Best,

Jim

[MaryF Administrator]

HI and welcome, firstly the old fashioned name LA coagulant is one of the tests used for Hughes Syndrome/APS, not a Lupus test. It is pretty vital you get a Hughes Syndrome/APS specialist.

Many members on here are from the USA and as you have said where your location is they can help you with who they recommend, also here is our charity website: ghic.world/ Many specialists listed on there. It is not unusual for people with this condition to have a higher INR target set due to our blood thickness, and some on Warfarin also have to take Fragmin injections if their INR drops too low.

Some on here have had spinal surgery, and the knowledge of a good surgeon who fully understands Hughes Syndrome/APS is vital. A good bridging plan is essential.

The various names, Hughes Syndrome, APS, Antiphospholipid Syndrome and Sticky Blood do get used,

MaryF

[Lure2]

Hi there,

You have got exstremely good answers from our two Specialists (no Doctors) who know our illness very well.

I would like to add;

When we have Lupus Anticoagulant in our blood as some of us here have (I have LA and the other two antibodies mentioned above in high titres since several years), it can be difficult to maintain a steady and correct level of the INR. Therefor I selftest as I need to have a close control of my blood as it changes INR-number very easily.

Before I started selftesting I had to do a lot of doubletests in the vein at a hospital-lab so see if there was a difference between the INR in the finger taken with the machine at home and with the vein at the lab. There was a huge difference (if I had an INR of 5.0 in the finger I had perhaps 4.0 in the vein taken within a 3-4 hours time) . Always the higher number in the finger.

When you test your blood it is the vein-blood taken in the arm that you can rely on.

As said before you do need a Specialist of autoimmun illnesses who knows our illness. That is very important! Often a Hematologist or a Rheumatologist but not all of those Specialists know our APS.

Best wishes from a hot Stockholm

[jetjetjet]

Here where i was dia. i was told I had lupus anti and i started reading about lupus and when i went back to my Doctor she said i didn't have lupus i had APS and it was at one time been called LA and now thier is a LA factor in the blood so it is now referred to as Aps . so some confusion stems from that i am sure as i was - i am shocked to as in your bridging for your hip surgery that they put you back on your high dosage of warfarin and stopped your lovenox or{ Enoxaparin is the name of the drug } and stopped your enox. i have had many surgeries and procedures and when the driding has been done they always continued Enox till INR was met to where your range should be . This makes me believe as others above you need an APS doctor. I have walked away from a few doctors that didn't have a clue what they were talking about.AND a couple in the Emergency Room believe it or not . Let me know if i got the fax wrong on this

[Ray46]

6. Heamatomas would come from trauma of some sort, but typically be much worse on warfarin. I certainly bruise far far worse on warfarin compared to before, or even compared to on clopidogrel.

[Hidden]

While it might seem a bit far to travel I would suggest you seek at least a second opinion ( which they might do online) at Hospital for Special Surgery in New York (hss.edu/). The APS Center of Excellence along with their spinal/orthopedic/neurosurgical expertise in dealing with the complexities of APS + spinal surgery make them a highly experienced clinical center for folks like us...I too have APS (LA+, B2GP, elevated & aCL AB positive w/ Hx of unprovoked VTE) and have experienced the same conundrum of having to discontinuing warfarin anticoagulation prior to a procedure which resulted in a TIA episode and visual field loss...even VERY experienced rheumatologists and hematologist-oncologists get snarled up with the issue...not the case at HSS. BTW, the cohort of Eliquis & Xarelto (Novel Oral Anticoagulants-NOAC) patients who were studied who had the APS comorbidity thus far and allowed have FDA approval of NOAC for DVT WAS QUITE SMALL.....iffy data set size and duration in my opinion....even though exUS it seems to be growing in popularity....