Anyone on Eliquis?

[Brenty54]

Hey guys. Is anyone else on Eliquis? How is it working for you? I have been on it for 2 years, but lately, I my heart has been jumping and my BP is slightly elevated. Just wondering.

[KellyInTexas Administrator]

Hi there.

I would need to know your history of APS. In detail, actually. I would be very interested in knowing tour clotting history, ( arterial and or Venous) and any neurological involvement or symptoms.

A few on here are on Apixiban or its ( somewhat ) similar sister drug, Rivaroxaban.

I have just failed Apixiban ( eliquis.)

I clotted through within a few days, felt horribly ill, and had a TIA.

What I can tell you is that Eliquis needs to be dosed every 12 hours at at least 5mg for APS patients , almost universally. My instructions were to adjust my own dose of Apixiban based on my APS symptoms. My dose range was 5mg, 7.5mg, or 10mg every 12 hours depending on APS symptoms, and that’s what was actually printed on the medication bottle.

This is only because I failed high intensity warfarin therapy, although American Rheumatoligist ( APS Specialist) does prescribe Apixiban quite often to her APS patients with great success.

I have a feeling you might not be dosed at a high enough level.

( I am letting you know for safety’s sake - although I know you know this- I am not advocating you do this without clearing it with your doctor first.)

If you have experienced arterial involvement as well, a well seasoned APS specialist neurologist or Hematologist will prescribe an antiplay, preferably 75 mg clopidogrel, along with the Apixiban. A statin is prescribed if cholesterol levels are raised, along with plaquinil.

I have a lot more information for you- but I’d like basic information from you first.

Have you ever been on warfarin? If so , what was your target INR? Why were you discontinued?

In the meantime, be aware that rivaroxaban is no longer recommend for APS patients. I realize Apixiban is not rivaroxaban, and Apixiban is actually superior to rivaroxaban- I’ll tell you a little bit about that tomorrow.

The key to success with Apixiban in APS is getting a high enough dose, according to the doctor who recommended it to me.

She said I was her first patient to “completely fail it” like that. But again, I have a very severe and refractory case. I don’t know enough about yours.

I’ll chat more with you about this tomorrow. ( I’m in the middle of a migraine- but wanted you to know - yes- and maybe you can simply up your dose and do better. )

I’ll try to help you with the logistics of this.

[Brenty54 in reply to KellyInTexas]

Thanks Kelly for the info. I need to find a good APS specialist in my town. That will be key. I'm praying for you. Night!

[KellyInTexas Administrator in reply to Brenty54]

Well... maybe if you are in a huge city- but even then chances will be slim.

Thank you!!! Appreciated very much-

[Brenty54 in reply to KellyInTexas]

Orlando.

[Frodo in reply to KellyInTexas]

I wondered if it's ok for me to join the conversation, Kelly and Brenty54. I would like to know more as well. I'm currently taking Apixaban at 2.5mg twice per day (Parox Afib and positive APL antibodies). Thanks in advance if you can help, no worries if not.

I'm very confused about my treatment after reading this - "What I can tell you is that Eliquis needs to be dosed every 12 hours at at least 5mg for APS patients , almost universally. My instructions were to adjust my own dose of Apixiban based on my INR symptoms. My dose range was 5mg, 7.5mg, or 10mg every 12 hours depending on APS symptoms, and that’s what was actually printed on the medication bottle."

I thought measuring INR wasn't a factor when using Apixaban, that INR was only relevant to Warfarin users? Plus, despite taking the Apixaban I'm still getting migraine every other day most of the time, and I had wondered if that was because I needed a higher dose, but couldn't find any information about it. (I was told I wouldn't be given clopidogrel as well as there would be too high a risk of a bleed.)

The alternative explanation, which I think my GP would go for, would be that my migraine isn't caused by APL, as their question is 'how do you know whether your migraine is 'just' migraine or is APL related?'. I thought having three positive antibody tests was a good indication, and autoimmune disease and stroke in the family history. According to current APS research the antibody I have IS related to migraine. But this is apparently not enough to provide a definite diagnosis - I'd have to actually have documented evidence of a blood clot or stroke.

I haven't had any arterial involvement that I know of but have had what might have been TIAs, and neurological symptoms etc, but which have all been called 'complex migraine aura'. (Nothing shows up on scans.)

Thanks for any enlightenment you can offer! Apologies if it appears I'm hijacking the thread.

[KellyInTexas Administrator in reply to Frodo]

Thank you , Frodo-

I’m glad you caught my mistake. Im sure you were confused- I should have typed , “ my instructions were to adjust my Apixiban dose according to my APS symptoms “.

I edited and corrected my typo just now.

Im glad you’ve joined in, no worries!

It will be a complex conversation that ensues, and for the most part i can only speak to aggressive DVT’s as this is what applies to me. I am forming DVT’s at a rate of about every 2 to 3 months despite a very high INR ( yes I actually mean high INR this time! Ha! My local Hematologist has my INR set at about 5.0)

The advantage of Apixiban is less bleed risk than warfarin at a higher dose.

I do not know How this particular American doctor handles her APS patients with regard to Apixiban If they have not had a clot. I know she is a firm believer in sero negative APS- that’s not an issue. I don’t believe, however, she would prescribe 5mg Apixiban twice daily. I wonder if she might prescribe your 2.5 mg twice daily? You see, it’s out of your system for the most part in 12 hours. There is a little half life going on- but not much of a slope with such a small dose. Why don’t you try asking your doctor if he or she might prescribe it this way? With the headaches perhaps a partial clopidogrel. There’s no reason not to take only part of a 75 mg. And you can take only a portion of a clopidogrel only every third day or so. Then if you see you have no bleeding, and headaches don’t improve, add a little more clopidogrel.

I might propose this scenario to your Hematologist. But only add one thing at a time. One addition in three to four week increments.

It is very unusual that Rheumatoligist’s here in the USA get involved in hematology. It’s unheard of here- just like in the UK. It’s similar to how dr Hughes dips his toe in the world of hematology and will trial heparin briefly. ( interestingly this woman studied under Prof. Hughes and is on the recommended list.)

[Tofino5 in reply to Frodo]

Hi Frodo, 2.5 twice daily seems much too low. The usual dose is 5 twice daily, and it is not harmful - or risky - to increase it at times to alleviate symptoms. Like migraines.

I checked my bottles of Eliquis but unfortunately most everything is covered up with pharmacy labels, so I can’t see what is said about adjusting the dose, but I didn’t check their website since I’m not at my computer now.

My doctor is fine with my adjusting the dose if it helps my symptoms, mainly the migraines.

I don’t think you’re hijacking the thread and I am jumping in!

[Deronel in reply to Tofino5]

I am also on 2.5mg eliquis twice a day. My cardiologist says that is the proper dosage based on my age (88) and weight (120). My research verifies this. It has been working just fine for two years.

I am also on 120 mg Sotalol twice a day. It prevents me from having afibs.

---Deronel

[Tofino5 in reply to Deronel]

You are right, we are each so individual and no one thing is right for everyone. Working with our doctor is of utmost importance.

[Frodo in reply to Tofino5]

Thanks Tofino5!

Do you think it's ok for anyone on Apixaban to increase the dose with increased symptoms, or just you with your particular constellation of very severe symptoms? I don't think my GP will agree to prescribe a bigger dose, my specialist is also very cautious, and I just had a lengthy bleeding episode following a tooth extraction which was a bit scary.

But if it were safe, I'd like to trial a larger dose when I have a migraine and increased neuro symptoms to see if it works. The issue with the lower dose is that it doesn't really establish whether or not the migraines are related to APS, which is what I really need to know.

[Tofino5 in reply to Frodo]

Only your doc can answer that, however KellyInTexas said in her post that it is printed that way on the bottle - I can’t see that since pharmacy labels are covering most of the bottle.

There are two things you could do: call the pharmacy and ask them this question; and check the Eliquis web site.

My doc said I could do it, and also said the initial studies used a much higher dose.

I don’t have a severe case of APS, that is KellyInTexas you are thinking of, and Eliquis wasn’t good for her unfortunately.

Please do that research and bring that information with you to your doctor. Bringing solid information is always helpful, in case he doesn’t know.

I do not recommend experimenting with the dose without your doctor giving the go ahead first.

[Frodo in reply to Tofino5]

Sorry, yes, I mixed you and Kelly up!

*although looking at your post further down the page - you've quite a lot going on!

[KellyInTexas Administrator in reply to Frodo]

The doctor is very unusual in how she prescribes Apixiban. This is not a normal protocol in the USA at all, ( nor would it be in the UK) but I do believe she is on to something.

She is very well versed in APS, certainly one of the top in the USA and the world. She is unusually skilled in the USA the deep understanding of the interplay of the diseases that go hand in hand, and the clinical understanding of the patients history, etc.

I see now after re reading your info you are currently dosed twice a day. ( never hesitate to bring things to my attention - I am loosing my vision and lines of text blur and jump and tremble. I need to edit my profile and probably explain this. My poor vision has been a struggle for me as I’ve lost so much of it due to clots to the optic nerves. )

I would absolutely not increase your dose without discussion with your doctor first. The reason being is you have not actually clotted. I think an anti platelet might be the better choice first, or perhaps 5mg. I wouldn’t begin to know how to asses that risk/ benefit for you.

What I can tell you is this doctor told me the following statistics:

“ APS patients who are on anticoagulation therapy are 4 times more likely to clot than to bleed .”

I think this is a broad statement in light of the new paper Beverly Hunt released this past week which stratified risks. Sticky Blood Mentor posted it for us.

I believe it is well worth perusing this with your doctor. It may be that an addition of an Antiplatet and only an evening dose at 5mg would help, with a morning dose of a quarter only if clopidogrel. ( or jr aspirin) .

I have aggressive , refractory deep vein thrombosis, and even with this history doctor thought it wise to start my first morning dose at 5mg and see how it went. This was only considered a trial for me, and a plan with my local , Texas based Hematologist was in place should it fail.

You may find variations on a theme is the symphony that works for you. But each pharmaceutical you bring on really increases a bleed risk if it’s going to be supratherapuetic. I feel you do need something more , but exactly what that is will be and in what combination will be the question.

[KellyInTexas Administrator in reply to Frodo]

Oh, I just saw this.

Hmmm. This bleeding episode is why I would be very cautious. I think the aps specialist prescribed it this way to me- up to 10 mg exactly because of my, “very severe constellation of symptoms.” ( that’s a very good way to phrase that. )

Also, I had already,”proven out” I had not had bleeds on high dose warfarin. ( 18-20mg Warfarin daily.) I have read on here many say the dose of warfarin you take does not matter, it’s the INR that matters, but my hematologists tell me that the more warfarin it takes to thin the blood is a reflection of the thickness of the blood. I did ask if my other medications could be interfering with its metabolism, and I was told no. I have clotted through high intensity Apixiban, and high intensity Clexane, and high intensity warfarin. So I tend to think, at least for me anyway, that this must be the case. Dr Natasha Jordan of the London Lupus Centre also told me this same thing. So if this is indeed the case, that the more warfarin your body needs to keep the INR in range is a reflection of thickness of the blood, then I would be cautious about raising your level of anticoagulation in light of excessive bleeding with a tooth extraction.

But... then why do those migraines persist with you? I think the answer might lie with your arteroles... this is a question for your Hematologist. Rheumatoligist? Did you have a Rheumatoligist?

I answered earlier today and mentioned it might be a combination that might me the answer. A partial Antiplatet and partial increase of Apixiban. Why not quarter Apixiban? 2.75? Why not ask?

[Frodo in reply to KellyInTexas]

Yes, I was hoping to try Clopidogrel (aspirin/mini aspirin makes me ill) but GP thought bleeding risk would be too high, & as he isn't an over- anxious person I usually trust him. I'll see how it goes. I'm not as ill now as I was a few years ago, which I assume was a 'flare', so if that happens again I'll definitely suggest this.

[Wittycjt in reply to Tofino5]

No youre not jumping in... the whole point of this site is to help each other and learn... I appreciate youre and everyone’s input👍👍👍

[Tofino5]

Hi Brenty54, yes, there are others that are on Eliquis. I switched from warfarin to Eliquis just over 2 years ago, due to severe and worsening migraines (I retired early due to migraines). My APS specialist had good success with Eliquis and felt it could help me. It did - and it does. I have trialed twice adding clopidigrel, but that makes the headaches worse, so I take a baby aspirin daily for an anti platelet.

I believe, now others may disagree with me, but it’s my belief that warfarin was bad for me. My range was 2.5-3.5 and I had to battle for that, and for 10 1/2 years my INR was very erratic. I watched my vitamin K microgram intake obsessively, but it was just never a stable reading. However, I only had microclotting while I was on warfarin. On Eliquis I very rarely have microclotting.

I have triple positive APS with high titres, LA, Sjogren’s and Hashimotos. I’ve had PEs and DVTs.

As for blood pressure, mine has always been erratic, up and down. So propranolol was added to the mix and the BP settled down.

Please please get yourself checked! I can’t tell you if the heart jumping is a side effect, but either way it is not something to ignore!

Anita

[Brenty54 in reply to Tofino5]

Thanks for the info. I will get serious about assessing where I am in this.

[Tofino5 in reply to Brenty54]

Did you say what dose you are on? I can’t find that. I’m on 5 twice daily.

[Brenty54 in reply to Tofino5]

5mg twice a day.