I have APS and Celiac Disease. I have had two dvt episodes in the past. The great veins in right leg are blocked. I have had trouble balancing my INR. My doctor switched from Coumadin to Lovanox. I was giving myself 150mg once a day for three months. Bloodwork was good and at therapeutic levels. Then I started having pain in my right leg. I had an ultrasound done on my leg. I have a new clot in my upper thigh on my right leg. The doctor switched me to twice 100mg Lovenox injections. I have another ultrasound on 12/30 to check the clot. I am concerned about Lovanox, if it is the right medication. Is there something else that I can suggest to my physician.
Now, I have had to have my right knee drained twice in 2 weeks. Both times 35 cc’s of fluid was drawn. Fluid is normal synovial fluid. Today was the second draw on the knee. The orthopedic Dr. Injected a steroid to help the knee. I hope this keeps the swelling down. I trust my orthopedic. Could this be connected with my conditions?
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DaCoach
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I can give you my take on this, I had a pulmonary embolism that was approximately 8” long sticking in the right atrium of my heart and several dvt’s. Honestly I thought I was a dead man. By God’s grace I was given a second chance, I was in the hospital for a couple of months on lovenox (very painful and I bruised so bad) i was switched to Coumadin and haven’t had any DVT’s or pulmonary embolisms since.
I do understand the INR issues as well, I was having INR bloodwork every week and sometimes every two weeks because of it being so unstable, not to mention many of us with APS, our INR need to be higher than 3, not sure what your target is but mine is 3.5 to 4 it’s hard to get it stabilized, I wish you the very best of luck and prayers. Merry Christmas to You and Yours.
Have you now found a Specialist of autoimmun illnesses who understands this illness we have? Exstremely important to get a Doctor who is knowledable. Usually a Rheumatologist or a Hematologist.
Warfarin is said to be the best anticoagulation drug and you are also Lupus Anticoagulant.
The negative thing is that it can be difficult to maintain a steady INR which we must have.
Either test in the vein at a lab or hospital or selftest at home and do both test rather often. Also paralelltest the two bloodtests to make sure it is not a huge difference in INR between the two tests taken within a couple of hours only.
After some tests we can see if there is a difference and if any, we can calculate with that difference to find the correct value of that special day. It is always the vein value that counts. Usually the fingerprick value is a bit higher in INR.
Probably you need a higher INR than 2.0 - 3.0 if that was the therapeutic range you had got.
I am Lupus Anticoagulant positive and need an INR of 4.0 to feel ok.
I have a new hematologist/oncologist now that seems to be willing to learn more about APS but is not willing to maintain a higher INR. I was getting tested once a week. I think my new dr may be more likely to be allow home testing. I have read that home testing is not recommended for APS. Is this why you are suggesting to test with lab test and finger stick to see the difference to use as a reference.
Yes, we need to know how much difference it is between the vein-test in the arm and the fingerprick test with the CoaguChek XS (my hospital has changes to another machine here in Sweden with not so big difference between the two different blood-tests) but the CoaguChek XS is the machine often used in most countries.
After you know the difference (parallelltest at least 5-times perhaps) you can test at home as then you know the correct number. It is always the vein-value that counts! Some times it can be very difficult to test at home especially with Lupus Anticoagulant positive.
With the new machine the difference is around an INR of 0,2 for me (with the CoaguChek XS I had a difference at 1.0 or even more) and I am so lucky to be able to test very often. That is very good now when Covid-19 makes it almost impossible to make a test at the hospital lab.
Usually I go to the hospital lab every 3 months perhaps for a parallelltest to make sure the machine is working well.
Usually, the Doctors that are not so knowledable of APS and our very sticky blood, are afraid that we are going to have a bleed and that is understandable, as the INR can be very erratic. We very very seldom bleed from APS but clot a lot.
I have a Fragminshot to take when my INR is under my therapeutic value (3.5). You could have that also but you should stay at a higher INR than you have today and test more often. I know I am lucky here and I do wish you could be that lucky also. Talk to a Doctor who is very knowledable of this illness and who understands that we have very sticky blood. Good Luck!
Hi, I am triple positive and unable to take warfarin, I have been on clexane, as an anticoagerant, (brand of heperin, like levonox, I also take daily aspirin and clopidogrel, anti platelets. This works for me, been on this combination for over 15 years now with no additional clots.Sometimes its trial and error to get us APS patients on combinations, as we are all so different and unique.
Have a chat with your orthopaedic Doctor, to see if your inflammatory blood results with your knee could relate to your APS or its just that your unlucky to have separate issues?
There are some of us that lovenox ( enoxaparin) does not work for. I am one of them.
Are you in the states? Which one?
I can tell you right away that for APS patients you are not not being administered lovenox correctly.
You are being given it once daily, every 24 hours . This means you are being 1.5 mg heparin per 1 kg of body weight every 24 hours.
You should instead be dosed 1mg per kg every 12 hours . This will keep you steadier and avoid a trough - providing you steadier coverage.
I had a hematologist in Texas dose me your current way- 1.5 mg per kgs. I clotted within a couple of weeks- and felt bad. Migraines, and the usual APS symptoms.
I was put back on Coumadin/ warfarin. ( which I had already continuously clotted through. )
My GP sent me to London and I saw an APS specialist who recommended to put back on lovenox ( enoxaparin) high intensity at the correct dosing schedule - and added clopidogrel. ( for me this was ok as I have neuro aspects- seizures and TIA’s)
I weigh 112 -115 and I was put on 60/60 mg enoxaparin FYI.
My inr was set at 4.5 FYI, and often bumped to 5 and I felt better at 5 and so far - diagnosed and started on warfarin November 4 2016- have never had a bleed.
Unfortunately my hematologist back in Austin Texas would not agree to this plan from on of the top the top APS specialist in the world. So I’m still on warfarin.
I now have a new hematologist- we are working with treatment options with rheumatologist. ( rituximab/ IVIG.)
I suggest talking to your hematologist about split dose lovenox and adding clopidogrel if necessary,
I am in Illinois. Right now I am taking 100 mg every 12 hours. I will discuss the possibility of adding clopidogrel. I am really thankful for everyone giving advice. Thank you
I’m glad to hear you are receiving a split dose. For some reason I didn’t catch that.
Illinois... be safe! I have good friends in Ullin/ Carbondale. ( southern Illinois.) Their daughter is a very good PA near there. Also parents are Alum and prof with SIU. Are you near that area?
Tell me about it! I’ve got a fairly good team in Texas now. Also U of Michigan is making great strides. Dr Jason Knight. ( Rheumatologist.) you are not too far away.
Please have a look at : ( I’ll send link to eular recommendations antiphospholipid management rheumnow.com/content/2019-e...
Hi DaCoach. Sometimes with unstable INR, they can give you small dose of vitamin K to take daily and increase the Coumadin dose.
I second what KellyInTexas said above about lovenox twice a day. Once daily dosing has a higher failure rate in hypercoaguable disorders. Only approved treatments for APS are lovenox or Coumadin. Some use arixtra/fondaparinux along with aspirin but this is not approved. They may add aspirin (if you aren’t on it already), aggrenox or clopidogrel if you fail with either of these therapies. However, they are better at preventing arterial clotting such as stroke or heart attack rather than venous clots.
I hope your next US shows resolution of the clot so you don’t have to worry about any of this. Please keep us in the loop with what happens. ❤️xx
Thank you, I appreciate your insight on my condition and medication therapies. I had to take vitamin k one time when my INR hit 10. My gp wasn’t too worried he sent me to get the vitamin k tablet form the pharmacy. The next day I was in the 4 range. I have always felt better with a higher INR.
You’re welcome. Haven’t been on here in a long while.
I was talking about taking vitamin K every day but not for reversal of INR. People with labile INR usually have variable vitamin K intake. While vitamin K inhibits Coumadin action, in small doses it’s like making sure someone is eating the same exact salad of the same exact amount everyday, which keeps your baseline INR stable. This is done a lot for the elderly who have waxing and waning appetites so they don’t take in vitamin K at the same amount everyday. So we give them a small amount daily and it keeps their INR pretty stable. In order to negate the effect of vitamin K intake, the dose of Coumadin is usually increased to reach your target INR. Make sense?
With the right Hughes Syndrome/APS some patients stay on their Warfarin/Coumidin and do injections if their INR drops, often backed up by not only local blood draws but also self testing, I would really ask for an appointment either phone or Zoom or something, whichever they suggest, if not doing face to face physical appointments to try and find the best path through for you. MaryF
So much is individual and depending on our blood and type of APS. Also what help we can get from a Specialist and how often. Hope you can talk to a very knowledable Doctor who is willing to help you.
The tough part is the knowledge level of APS in the states is limited. When I was first diagnosed, I saw Dr Baron in Chicago. He was known as a specialist with APS. The last time I saw him, he told me that there is nothing more he could do for me and said I would be a blood thinner for the rest of me life. So I am hoping that my current hematologist will change her thoughts about treatments. I have started to compile information to present to her. I am thankful for all toe good information that I have gained through my conversations here.
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