Coumadin question???

[kjjj76]

I was diagnosed with lupus and secondary aps 16 years ago. Placed on plaquanil and baby aspirin for treatment. 1 year ago I had a stroke. I am now on warfin. My INR has not been therapeutic since starting medication. Dr. now wants to switch me to eliquis for treatment. Is this a safe?

[HollyHeski Administrator]

Hi and welcome.

We are here to give support and to share our experiences and knowledge, not to give medical advice. Only your doctor can do that as they know your health issues.

Regarding Eliquis, this drug is only advised to APS patients that have not had a clotting episode, controlled clinical trials have shown positive for people with a theraputic warfarin INR of 2.0-3.0.

As plaquenil & aspirin was not enough to prevent your stroke, I presume your INR level was set 3-4? Most people with this set high level also have hepirin or clexane if their INR drops below 3.

I would be very wary of going on eliquis only, please discuss this and your concerns with your doctor, as there are combinations of anticoagulants that may suit you better.

[kjjj76 in reply to HollyHeski]

thank you for your response. My hematogist suggested eliquis because I am unable to maintain a steady INR between 2 and 3. He has stated several times that eliquis is not the drug of choice but Coumadin is not working either. I was not seeking medical advice I am just nervous about switching medication. My PCP who monitors my INR weekly goes strictly by what my hematologist prescribes. I will still be monitored once I start the new blood thinner. The "better than nothing" idea doesn't thrill me either.

[HollyHeski Administrator in reply to kjjj76]

Totally understand how you feel.

I also had strokes and couldnt stabalise my INR, my target being between 3-4. I came off warfarin and went on clexane injections, plavix and aspirin daily. This has worked for me for over 10 years.

I personally dont think eliquis on its own will be enough for you, which I think is why you asked is it safe.

At the end of the day this is only a decision you can make with your doctor and you sound like you have a good relationship and will be monitored.

Hopefully others on here will give you more confidence from their experiences.

[Peecue in reply to kjjj76]

I totally understand how you must feel especially when INR jumps up and down like a yo yo. Have a look at the list of foods that interact with warfarin and see if you are taking any of them. anticoagulationeurope.org/p...

I was also told at one of the conferences by one of the speakers that you must eat the same amount of green veg every day.

I was also told that if you are taking something new it takes up to 5 days for a proper change, so if you are being checked every couple of days there is going to be a change or not depending on what is happening and when this was managed by the clinic I was attending clinic 3 times a week with my doses being changed every 2 days. Eventually I got a machine and now self monitor, but I ask for a 5 day period for things to change before I recheck or I need to check earlier for bruising etc.

Wishing you all the best, but if you have had a stroke I would strongly suggest that you are referred to a specialist with APS before you let this happen?

[JOHNN]

I was on cumadine for a while. My hemotologist took me off it because due to my stroke I began having seizures. He felt the risk of falling and hitting my head was too great to be on cumadine. My neuorlogist agreed. I been on plavix. I and my wife are very concerned plavix will not do the job. it's like being in a burning boat either way I'm taking a risk. It's been 9 years so far so It nust be working okay. I don't have any knowledge of eliquis.

[Lure2 in reply to JOHNN]

Hi JOHNN,

I have learnt here that Plavix, which you use instead of Warfarin, is an antiplatedrug and not an anticoagulationdrug.

I now wonder if your Hematologist understands this autoimmun illness we have and that we can not strop anticoagulation.

I wish you could try to get a Specialist who can treat you for your HS/APS and give you the correct anticoagulation drug and also treat you for your seizures that is a symptom from our illness for some of us. The neurologist we have found here do not usually "get" what our illness is about - too thick blood which has to be properly treated and remained on a steady INR all the time. For that we usually need selftesting.

Look for a Specialist who has had patients with our illness before as he will understand what you talk of and be able to answer all your questions and treat you well. We need a rather high INR to get rid of the neurological symptoms. We bleed very seldom from this illness but clot or get a stroke.

Best wishes from Kerstin in Stockholm

[Lure2]

Hi,

I wonder if you are postitive to Lupus anticoagulant? In that case it can be difficult to maintain a steady INR without at least selftesting?

Selftesting makes it much easier. Warfarin is the best anticoagulation for us if you can handle it and has the medical help from your Specialist

Have you tried selftesting? I am triple postive with LA and need an INR of 4.0 to avoid more TIAs, PEs or DVTS etc.

Best wishes from Kerstin in Stockholm

[Canadianblues2000]

Kjjj76

I would go with what your dr. suggests. Being on Warfarin/Coumadin I need to have my INR done every couple of weeks and my veins are scarred because of it. I would love to be on one of the new drugs that are on the market but, they have not been tested on patients that have Anti Phospho Lipid Antibody Syndrome so I have to stay on Warfarin/Coumadin. You really have to watch what you eat on Warfarin anything to high in vitamin K will through your INR out. My INR is out right now from being on Antibiotics so every couple of days I need to have my INR done until its back to range. Your Dr. knows you best trust him and try the medication he suggests. Hope this helps

[Lure2 in reply to Canadianblues2000]

Hi Canadianblues2000,

Are you Lupus Anticoagulant? Otherwise and even if you are postive, I suggest you should selftest to be able to do it as often as you have to, so you know you are always stable.

Best wishes from Kerstin in Stockholm

[Ray46]

Warfarin only works in therapeutic range - if your INR has not been in range in a year, you would be better off taking sugar pills (fewer side effects). If you have APS then Warfarin is not "safe" if not in therapeutic range, end of story.

The real question is not "is eliquis safe", or "is it safer than warfarin" (which isn't safe, see above), it is "which other drug should I try next".

Your basic options are (1) another VKA (vit K antagonist, similar to warfarin, others exist but not used as often), (2) injecting heparin (3) newer anticoagulants, NOACs/DOACs, of which Eliquis is one.

Another VKA will most likely have same problems - can't hit therapeutic range, and as far as I know, none of the other drugs are licensed or approved or tested (in clinical trials) for APS treatment, that's right - NONE. Heparin is approved only for short term use in pregnancy, and the others are as yet untested with APS patients (at least those with stroke) and the gods of medical science have decreed that they must be tested specifically with each subcategory of APS patient (for reasons mere mortals like me cannot fathom).

So, you are into the realm of the unlicensed and untested. This does not necessarily mean _unsafe_ but rather _unknown_ - what you are on now is _known_ unsafe (because not in range).

There are plenty of people on Heparin (LMWH) for APS, but also plenty on rivaroxaban, eliquis, etc. - the DOACs/NOACs are essentially oral heparin (Prof Hunt's words not mine). There is more long term experience with using LMWH but that's because it's been around longer, there are very possibly more patients on the oral drugs now.

What you need to ask your doctor (in my opinion) is "what are the options outside of warfarin and why eliquis". If the answer is "because I have X other patients for Y years on eliquis, I know it and trust it" then all well and good, the answer shouldn't be "because clinical trials show..." (because there aren't any for APS), and if the answer is "ummm" (because the real answer is "the eliquis rep takes me to the best restaurants") then you need a second opinion.

Alternatively you can always ask "how many patients like me do you have on this drug and how are they doing", but then you may need get "I don't have any other patients like you" in reply - which can be interpreted in multiple ways [I would actually suggest "how many Lupus+APS+stroke patients..."].

You need to understand your doctor's reasoning behind the recommendation, because once you are into untested and unlicensed you are relying on their knowledge and experience. I had a conversation with a consultant when I was looking for rivaroxaban, but had to settle for warfarin (so the other way round in effect), which went roughly as follows:

"you can't have rivaroxaban because there's no proof it works, it has to be warfarin"

"ah"

"but don't worry, if we can't get your INR in range or if you have a life-threatening reaction to warfarin we'll give you rivaroxaban"

"er I thought you just said rivaroxaban didn't work"

"we'll give you rivaroxaban because we _know_ it works, we are just don't know 'officially' so we can't give it to you as first choice"

I knew what he meant.

[Tofino5]

Ray46 thank you for an intelligent and thoughtful reply.

Kjjj76 I'm on Eliquis (since January this year) after 10 1/2 years of yo-yo INRs on warfarin. My horrible headaches are 80% better (I retired early because they were so bad). I have tiny veins and had blood taken every couple of weeks from the back of my hands, and having scarring. Being able to eat more healthy is also a plus for me.

This is my experience.

BTW I am triple positive, LA, hashimotos and sjogrens. I'm also on baby aspirin and propranalol.