Blood Thinners

[GirlfromTennessee]

I currently take Warfarin, my dose is 4mg daily this keeps my INR around 2.5-2.8. My question is... now I understand that Xarelto now has an antidote. I Do Not have any type of Afib or any related Heart condition. I am truly just an APS patient. My Blood thickens very quickly with any type of diet change, antibiotics etc. My question is would any type of the other Thinners be a good choice for me are since I need Thinners mainly because of my Sticky Blood? Has anyone like me changed from Warfarin to Xarelto? Has it kept your INR stable??? I literally just seen my Rheumatologist this past week but did not know about the new antidotes. In fact I trust y’all opinions more to start with than I do the Drs because in my area they just don’t know that much about APS!! Of course I would definitely have my Drs input but wanted to know if any of you guys have switched & how you were doing with it. Thank You!

[orygun66]

I tried Eliquis which is like Xarelto which my brother takes. Eliquis gave me bad nosebleeds so I went back to warfarin. When you take the new drugs like Xarelto no more worries about food interactions and no more checking your INR. It has real advantages. Eliquis was recommended to me by Dr Schofield because it is twice a day dosing and provides a more even level of the medication in your system rather than it going up and down like with Xarelto. I wish I could have stayed with it but it just did not work out. You might want to ask your dr about it.

Patti

[GirlfromTennessee in reply to orygun66]

Thank You for your input. Had you ever had nosebleeds before& did the Dr tell you why this happened?

[orygun66 in reply to GirlfromTennessee]

You're welcome. I have had nosebleeds while taking warfarin. Usually when my INR is over 3 or higher. I have sinus troubles too so combined with a blood thinner makes bloody noses from time to time. Also, an ED doctor told me the low humidity in Colorado can contribute to having them. When we drove back to Illinois to see family we all noticed our noses felt better. Something I never thought about because I appreciate the lack of humidity here.

[GirlfromTennessee in reply to orygun66]

Makes sense.

[murphylotte]

Hello girlfromTennessee

I startede on xarelto.

Because it is easier to deal with food wise and you dont have to be tested.

Im sure it is not working prober for aps people... i had a massive pain everytime i had my period. And the blod was never thin....

This is my experience and i must admit i fell much better on warfarin 🙏

Best of luck

[GirlfromTennessee in reply to murphylotte]

Thank You, it is so scary for us, for sure!!

[MaryF Administrator]

HI, I am on different medications and also Aspirin, my only experience with injecting was with Fragmin during pregnancy and after operations, and if I have to fly long haul. With my allergies I am not really a very good candidate for trying new things. I have to sit in hospital with any new drug regime administered in an emergency due to my extreme reactions. MaryF

[GirlfromTennessee in reply to MaryF]

Thank You, it does get confusing & of course trying to find ‘easier’ things may not always be the best!

[Ray46]

The issue with Xarelto/Rivaroxaban (and other NOACs) is lack of evidence and lack of licensing (due to lack of evidence) for APS. The RAPS trial showed equivalence to Warfarin with INR range 2-3, but they only trialed on venous clot (DVT / PE) patients, so the results only apply if you're in that subgroup. On the other hand the TRAPS trial failed and was stopped early, but it also didn't get anywhere enough participants for valid results, and it was testing only triple-positive high-risk patients - so that result only applies if you're in that subgroup.

The evidence for warfarin and APS is pretty sparse and (more worryingly) contradictory, particularly for arterial clotters. Anti-platelets often come out with better performance.

It also depends on how bad your INR variability is, the lower your time-in-range the higher your risk from staying on warfarin, there are various studies that say if you are less than 65% you are better off on something else.

I wouldn't worry about the antidote thing - biggest risk is ICH (brain bleed), and several studies[1,2] show outcomes for NOAC patients are better than for VKA (mostly warfarin) patients. This is _despite_ VKAs having an "antidote" when most NOACs do not. NOACs have also been shown to have much lower risk of getting a brain bleed in the first place.

I think there is a fundamental misconception (which extends to some doctors) about warfarin having an "antidote" - vitamin K, even injected, takes 24-48hrs to get clotting back to normal (longer than NOACs take to wear off). The warfarin "antidote" is actually there to address the risk of starting bleeding when INR has gone too high due to warfarin's variable dosing and interactions - a problem that NOACs simply don't have. If you've already started bleeding it's too late for vit K.

End of the day it's down to you and your doctors and their experience, because there is so little evidence to go on. You will find individual stories going either way - probably more favouring warfarin because warfarin has been around much longer. Don't be afraid to seek multiple opinions from more doctors, and don't be afraid to ask them what their experience is, how many APS patients they have on which drugs.

Personally, I asked for Rivaroxaban but was denied it ("because we don't know it works") and told it had to be warfarin, but they also said that if I had a dangerous reaction to warfarin I would be put on Rivaroxaban instead ("because _we_ know it works"). You may get a doctor to admit privately off-the-record that Warfarin was originally licensed and used because it was the only oral drug available, and it's used now because it's what we've always used...

Refs:

1. Direct oral anticoagulant- vs vitamin K antagonist-related nontraumatic intracerebral hemorrhage.

ncbi.nlm.nih.gov/pubmed/288...

2. Association of Intracerebral Hemorrhage Among Patients Taking Non–Vitamin K Antagonist vs Vitamin K Antagonist Oral Anticoagulants With In-Hospital Mortality jamanetwork.com/journals/ja...

[GirlfromTennessee in reply to Ray46]

Thank you, my Rheumatologist only recommends me to be on Warfarin not sure exactly the reason. He seems concerned about the ‘antidote’ situation. Also he claims Warfarin is the Best for an APS Patient. I live in Northeast TN & APS is a super rare disease & to be honest our Drs are just not that educated throughly on this disease. This is what makes it so frustrating for me!

[Lure2]

Hi,

I wonder if you are Lupus Anticoagulant positive? If so it can be difficult to keep a stable INR and you should selftest perhaps.

Doubletest fingerpricktest and veintest at a lab to find if there is a big difference in INR between the two bloodtests taken within a 4 hours time. It is the vein-INR (taken at a lab) that counts and it is very often lower than the fingerpricktest with a Selftester.

You have also a too low therapeutic range for APS. I do not know why your Rheumatologist has decided that range!? Afraid of a bleed probably if you are not selftesting. We do not bleed very often but clot from APS. What symptoms

My Hematologist (Specialist of bloods and APS) also says that Warfarin is the best anticoagulation drug for us. I think it is especially when we are triplepositive and with persistently high titres ( I am) and when we need a high INR (around 4.0) to be without symptoms. Most of us need an INR around 3.5 - 4.0 or even higher.

We have this illness all of us here but we are very different in bloods and symptoms and how careful we are to take bloodtests to keep our INR in range which is so important but difficult.

Kerstin in Stockholm

[sconaway160]

I live in the US and that my hematologist took all of his APS patients off of the new blood thinners because recent studies show that they are not as effective as Warafin.

[GirlfromTennessee]

My Rheumatologist did say that he felt they were not as effective as well. But was more concerned at the time not having an antidote.

[Tofino5]

Hi GirlFromTennessee, I switched from warfarin to Eliquis. For 10 1/2 years I had very unstable INRs and frequent testing. The reason for the switch however, was to see if it might possibly help my severe migraines. It did - immensely so. Nothing else had helped. I even retired early due to them, so getting relief was life changing for me. My nosebleeds are also far less frequent and less severe. Keep in mind that Eliquis is more steady in the bloodstream than xarelto. I wouldn’t use xarelto. So something about the warfarin was bad for me. It’s extremely important to know the reason for a switch, to decide if it makes sense or not. This is a very controversial subject, but this is my experience. Many great responses here. Don’t make any changes without fully understanding why and what the goal is. There is the old saying “if it isn’t broken, don’t fix it”.

[GirlfromTennessee in reply to Tofino5]

And you are correct. I think I will just stay where I’m at with the Warfarin. Thank You!

[Ylmom]

It is good to see everyone’s experiences. I am in the US. I started seeing my hematologist about three years, I don’t think he was very knowledgeable about APS. He saw my previous stroke and two positives and put me on Eliquis. I was just so thankful at that time to have a doctor finally treat me that I didn’t question his medication. This past visit, I tested positive for a different test and my numbers were higher. He said “I have been doing some research and with APS I need to put you on Warfarin”. I wished I would have asked what he read! I will ask when I see him again. I could tell that Eliquis helped with a few of my symptoms. I had no bad side effects from it. I loved not having to worry about interactions. But, I did always worry I was t on the right medicine. This is just my experience. I do know that we need to be our own advocates and know what we are talking about and research behind it when talking to docs here in the US. I am learning this as I go. Good luck 😃

[GirlfromTennessee in reply to Ylmom]

Yes seems we ‘all’ learn together. A good Dr will at least try to find answers for you!

[KellyInTexas Administrator]

The real question to ask is...

What were your APS symptoms before having the stroke?

If any, were they progressing?

Are your APS symptoms well controlled now, on the Apixiban?

What is your current dose?

( I also saw this doctor in Colorado. She indeed is very good. These are the questions to be asked. She is a Rheumatoligist, not a hematologist. With a severe case of APS, especially with neurological involvement, this does make a difference in some cases.she has however, worked and co published with a hematologist familiar with the Antiphospholipidsyndrome. )

She is very clear that it should only be a trial, what ever the medication that is chosen.

No medication can be the perfect choice for each patient.

I personally epically failed her Apixiban regiment. I clotted almost immediately, DVT’s , a tia, return of seizures, and actually went into very early caps. The VAST majority of patients do not. The vast majority of her patients are not as severely impacted by primary APS as I am, I suspect. ( I know of at least one other woman who is. And she did very well on the Apixiban. She had actually lost a log. I was in contact with her. This is why I was willing to try it.)

I would wholeheartedly do her suggestion again because it does make sense, what she suggested. It ” should have worked. “. She knew I was a very severe case. She thought the labile INR was too great a risk and wanted to stabilize the anticoagulation in my system and minimize the clot/ bleed risk . Apixiban offers these benefits. It also offers the benefit of being able to add clopidogrel with less bleed risk. A huge plus for arterial clotters.

I think we don’t know enough about the sub sets of APS yet. That’s the problem.

[GirlfromTennessee]

The only symptoms I had was my left eye would just all of a sudden hurt. Then I could not see hardly anything with both eyes but if I covered 1 eye did not matter which one I could see. Could not see with both eyes. It would last a good minute to 2 minutes & would be about 5 minutes apart. This sometimes would happen 3 to 4 times a day but not necessarily everyday.This went on about 4 months prior to having the Stroke. I have t had an episode since the Stroke.