* It’s being Prescribed because I’m continuing to have damage to optic nerves, migraines, and leg and arm vessel clotting. ( but for the true purposes of this topic, it’s the small brain vessels that would be best served by plavix as warfarin addresses these on a different matrix all together.)
* it’s waiting for me at the pharmacy, I’ve not yet picked it up. My husband is out of state so I don’t want to be here with our teenager alone...
* I’m getting mixed ( and strongly polarized optinions on the matter from hematology and neurology.)
*My APS specialty hematologist said he would give it a cautious nod of approval but the final say should be from neurology because the vasculature of the brain is what would be most affected by plavix
My consulting APS neurologist ( part of University if Texas San Antonio Research System ) who I have NOT found to be knowledgeable in application, though it very unwise when asked if adding plavix should be considered. She was certain I would ,” bleed out “ because I would ,” not be able to form a plug”. She said the addition of plavix would “ cut off two or three arms of the clotting cascade. The said it would increase the chance of a catastrophic bleed by two to three fold. She said she had watched with her own eyes, “ patients bleed out and die in front of her.” I asked if they were APS patients. She just looked blankly at me and said ,” ummm.” ( a little evasive? ) . That very flat monotone ,” ummmmm” was extremely hard to read. I do appreciate her caution. Her perspective as the physician watching a patient bleed out before her eyes must forever alter her perspective on these drugs. But what is the patient story? An automobile accident? Traumatic injury? True APS? Was it truest APS? This did not seem like comprehensive data.
( This is the same woman who refused to heed dr Hughes clinic letter he wrote for me stating I needed an INR of ,” at least 3.5”
She would not recommend anything over 3.0
( now she has changed her mind and agrees to 4.0 but that’s after I did my own thing with my hematologist.) Very brilliant woman, no doubt, but I have no use for her. I don’t think I plan to return unless something really unusual changes my mind. )
*so - that was two weeks ago. This past week I saw my treating neurologist- he’s been with me from the “ beginning “ of brain stuff- 2012. He diagnosed my seizures. He knows the neurologist I spoke of above from San Antonio- university of Texas health science system. He feels she is wrong. Since he’s my treating neurologist, he’s putting me on plavix right away. He said it should be perfect for my brain dysfunction. ( and continued vascular degeneration. ) He has many patients on both who have vascular disease and a heart valve issue ( A- fib) and they do fine. They are usually elderly. They do not have aggressive pro thrombotic disease like APS patients do, so he feels the risks of dual therapy are not as risky in APS patients as in the general population.
*He said there is only one strength. ( I asked for the lowest dose...)
* you can’t cut it in half ( I asked that, too... it’s all or nothing...)
Here are my specific questions to those of you on the forum ( and Admin) who have been on both warfarin and Plavix concurrently:
1. Can you take plavix every third day or so? ( I know plavix binds to platelet membrane, and stays there for as long as platelet is active, viable. ) There is no antedote for Plavix.
2. Did you reduce your INR a tiny bit with Plavix? I asked my neurologist and he quickly said no. I told him he answered to quickly... to think again... I understood they were acting on different cascades- the warfarin extending the TIME it takes to clot and the plavix the aggregation , But none the less, with the combination now at play, should the INR be adjusted down just a tad? He said.... “ maybe? “
I called my treating hematologist Thursday morning ( left voice mail message with his nurse) to let him know that my neurologist had added plavix, and should I adjust my INR, and could I please get a Work in ... I still have not heard! ( I keep having this issue...)
( please realize we are not NHS. It’s not under one system. Often my docs do send each other clinic notes- but not always. Often I’m surprised what they have, or Have not , received from one another.)
Thanks for help-
Kelly🌵
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Sounds like we were told the same thing- EXCEPT... the f’ing TB! ( yes- it’s this hilarious neurologist- whose son is friends with our daughter and spent his secondary school years grazing though our kitchen and skiing behind our ski boat!)
He is concerned about Imuran lowering the immune system and CAPS. He left the responsibility of contacting and investigating protocol to me... we are using plavix as “buying time until decision is made.” He needs more info. I just have to call Holme’s secy Monday.
Crikey I hadn’t even thought that caps could be caused by using further immunosuppression. Maybe that’s why they’re all stalling and taking they’re time getting back to me?? I was told they’re having meetings about it. Seems we’re both in the same position again Kel ! X
That seems like a good plan as they are well,versed and your situation. Good luck keep us posted, Cindy I hope what ever they decide finally helps you😞
All I can comment on is the photo of that nice and attractive woman with glasses: I like that photo very much and I guess it must be you Kelly. I read what you write with great interest.
My profile Pictures is quite hard to see - it’s half in the dark. It’s the only one I could find that “ fit in the circle” evenly!
I took this photo last week so people weren’t looking at a 1/2 blackened screen and sunshades.
I’m forced to learn a lot very quickly so hopefully we can all learn together. I will share all I can. It’s making me very sad... my brain is not handling the disease well at all. The thought of suppressing the immune system is worrying my doctors, which in turn worries me.
I take both Warfarin and Aspirin and have heard all the dire warnings regarding bleeding but we're all different and I think they are guessing as there are not enough of us to judge. My take on it is yeah I might bleed with the addition of Aspirin but after suffering over 30 strokes as shown on Mri's I will definitely clot without it. It's my brain so yep I'll listen but ultimately I'm going to make my own decisions.
Agreed. And here you are! ( quick shout out to what ever faith holds you strong, sweet lady! I’m on it! )
I presume you surely had an INR of 4.0.
And has the dual therapy helped you? helped? Did you stop the clots in brain? Reduce the number of them? Did immuno modulation or suppression conversations ever arise in your treatment with such troubles? Did you begin any of them, and if so with what results?
Well I had an Inr of 4 when I had the last stroke I was aware of so now keep my Inr at 4.5, I'm hoping adding the Aspirin has stopped any more occurring but until I have further Mri's we won't know for sure. Rather oddly my brain seems to be working fine, we did discuss immuno suppression but I have bad reactions to so many drugs we are very wary.
I cant comment on the warfarin with plavix - my mix has been daily heparin & plavix with aspirin every other day. This has worked for me for over 10 years.
Sort of the same principal of sorts, really. “ you can’t put more than one block on the clotting cascade or you will dissolve into a puddle of blood before you ever make it out of the front door of your home!”
I always get a mental image of the wicked witch of the West when Dorothy throws water on her... “I’m melting... “
You’re welcome! Now you have the mental image, too! Every time a doctor starts with it... my gift to you!
It would appear that your Neurologist knows what they are doing!!!! Some medical staff find it difficult to grasp that treating somebody who has naturally thick blood due to this autoimmune disease is not the same as treating somebody who has not got this on board with their medical skills. I do hope it all goes well. Hopefully your Neurologist will pull all other parties together so that everybody is communicating. MaryF
Out of curiosity-have they mentioned Xarelto? (+/- aspirin). You have been through an incredible amount of trauma and frustration trying to get answers and i think I might have contemplated jumping off a bridge if I'd been what you've been through! Immuran did nothing for me and I hadn't tried Clopidogrel. (might have been next on the list ;))
The trouble with a team of doctors that don't talk to each other and won't commit themselves, it leaves you wondering if the next pill you take will be your last! I still feel incredibly lucky that I'm 'sorted out' and as well as I am. Hope the same happens for you soon.
Actually, yes. But only by doctors who don’t have a true understanding of APS. Also, it was more in the beginning of my diagnosis so I hadn’t ,” failed” everything yet. ( by the way- this is my one year anniversary of my diagnosis. My second round of blood work came in confirming APS on Halloween 🎃 😂😂😂 And then I promptly got a massive DVT and was hospitalized for 11 days or something like that - admitted November 3 2016.)
I was allowed to leave hospital when INR reached 2.0 - It took 7.5 mg of Coumadin to do that. Actually it fell immediately. I couldn’t keep it at 2.0. No LMWH prescribed for dips... with a goal of it reaching 2.5-3.0 as target INR. Wow...How wrong they got it. The Hematologist assigned to me at the hospital didn’t believe I had APS at all because when he drew the antibodies they were seronegative that day. ( He had never had an APS patient. He was not willing to learn. )
I was 1.9 at London Bridge Hospital with Dr Hughes.
I found another hematologist who is better. But not an APS specialist Per se. He is at least willing to learn a lot! He has many clotting lupus patients with APS .
He did not know migraine was a component of a APS.... Scary. Even my GP ( actually TEACHES internal medicine at the university medical school in San Antonio!!!!..... yes. I’m kindly and patiently teaching him. We’ve developed a nice friendship.) did not know arteries could be involved. He just thought veins! Really scary!!!!!
So when a hematologist recommends Xeralto you have to realize I assume they just have no idea what they are doing. I have been so mismanaged.
I keep several printed off packets of the RAPS trial report ( stapled and in color ) ready to hand to my doctors when it comes up. ( it always comes up since my INR is so labile...yesterday there was a 0.7 difference between finger prick value and vein value. )
If it’s a GP, / gastro, etc, I’ll say, “ There is no way you would know this since your field of specialization is not hematology, but you you will find this interesting and it will help you understand my situation, and possibly other patients of yours also.”
They are always grateful, and indeed very interested and it makes the conversation quick and on point.
Now, if it’s a hematologist it’s a little trickier. I say, “ As a hematologist, you probably have seen the 2016 RAPS trial results, but just in case it got mixed in with a million other publications you read, or lectures you attended with conflicting times, let me bring this to your attention.”
Usually they do know it.
So, with that said, if this plavix/ warfarin gig fails, then maybe Xeralto. Or... maybe Xeralto with aspirin I’m hearing here now. There is a woman on forum ( Tofino? ) from Colorado I believe who sees dr Jill Schofield. If I remember correctly, Dr Schofield has her on Xeralto also.
She practices in Centennial Colorado. She trained in Dr Hughes. She is simply the best in the USA.
I am due to see her at the end of July 2018. It was a 14 month wait list. She’s Rheumatology.
I do believe she has some patients on Xeralto. When I first heard this my heart sank... I though- she’s Hughes trained?!?! How can this be?
If you keep failing...
My understand is about a quarter of us ( 29% ) re clot despit proper anti coagulation. The prognoses is “ functionally poor”.
My treating neurologist who prescribed the plavix did not know of RAPS trial. I explained it all. He simply said... “ what else is there to do, though?!?!”
I guess that’s about the long and the short of it really. Except the suppression discussion. Upstream and downstream discussion.
Anticoagulation addresses it downstream after damage is done.
Suppression/ modulation tries to address the problem upstream before the damage occurs.
You are stuck in the middle trying the best you can to live your life!
I’ve known all this for months just hoping I would not end up here.
But... I seem to be in a smaller sub set of APS patients yet that are more neurologic than others. Not sure what’s going on with this yet. We tend to fail LMWH. Quickly. Very quickly.
My need for Coumadin ( Warfarin) seems to great. My INR needs to be quite high. I only weigh 110 yet I take 16.5-17mg warfarin alternating every other night. My INR needs to be 4.0. -4.2 I have seizures, ( microclots in brain, pronounced livedo R on legs, arms, across shoulders) associated with brain tiny arteries) gait imbalance, strokes to optic nerves, central brain processing problems- ties to eyes and ears. suspected Micro Clotting in tiny spinal nerves. - I continue developing DVT and superficial clots to legs and arms ( detected by Doppler sonogram) and migraines despite INR of 3.5-4.0 . I will say the DVT’s are definitely less frequent and and not as large now that I’m keeping INR at 4 (+) instead of 3.
PET scans are showing abnormalities in some areas of brain with these patients who demonstrate certain criteria.
Some early informal studies indicate immune suppression might be equally as important as anticoagulation in this subset of APS patients . It’s dual targeted therapy is my very limited understanding.
Most APS patients don’t require immune suppression to improve.
I was a 'last resort' switch to Xarelto after warfarin and LMWH failed and the added Aspirin for anti platelet therapy. I was on this when I visited the London Lupus Centre. That was when I had the trial of Plaquenil after this visit-but it didn't significantly change anything after trialling it for 3 months. My Rheumy decided I was on enough other meds that I didn't need continue this but would have continued had I found a miracle!
I'm also just wondering you (as a teeny tiny person!) just metabolise everything differently. I have a few fat reserves I'm happy to pass on should you need it!!
BTW I have booked my flight for next August-my frequent flyer points deemed I could go to Munich (First class both ways!!) in Summer. When it's a 27 hour trip both ways the extra room is a dream for someone who clots. I will now look at a few side train trips while I'm there
I asked Dr Jordan ( London Lupus Centre) if perhaps my ever increasing need for warfarin was a reflection of a metabolism issue, or perhaps due to my anti epilepsy drugs and that my liver was “ busy dealing with those drugs also.”
She said, no. It’s a reflection of how severe your APS is.
Lol! Sometimes I need a little extra jiggle here and there-in all the right places- when my tummy shuts doen due to clotting I can get a little thin...
Now you know why I’m so excited for you that you’ve found a combination that works for you! ( because I truly feeel your pain...)
So, PROST! And well done on that first class leg room! 27 hour flight... woah...
This is helpful- our rheumatologists here in the states do not advise hematologists. This is extremely helpful general knowledge. It is useful to understand and hear this ( understanding clearly that it is general and not patient specific) from cross disciplines as it related to APS specifically.
Thank you very much. ( I do realize we have spoken about this before. It takes time.)
What was nice- was he brought he question forward to me.
That’s the limited understanding I have. This specialized APS sub set that perhaps will respond best to immuno suppression. I’m diligently working to understand this. I’m working with my neurologists here and perhaps London. It’s the immuno suppressant ( or modulation) Imuran. It’s the same Azathioprine. It requires a protocol.
Im eating a reasonable amount of greens. A loose handful of raw spinach every day steady. That’s my “ base line.” At lunch. I can travel with it in a bag if I need to to make my own salad.. Put it in a taco! 🌮 ! A burrito 🌯! A hamburger 🍔! I add to or take away at dinner to “ adjust” depending on INR.
I give it to a waiter, show my Medical ID bracelet, smile, and tell him or her to tell the chef to ,” do something amazing and fun with it- it’s fresh, triple washed, and fresh from fridge. Just use it instead of what they normally would.”
I believe most people do not need immunosuppression and many can live a symptom free and relatively normal life on their target INR.
However there are some people, myself included, who still have issues even with a high INR.
Even at INR 4 I suffer neurological symptoms, although less than with a lower INR. However, the slightest drop even to 3.4 will give me severe pain and issues assumed at the moment from spinal cord issues.
It’s this set of patients who continue to be unable to live a good quality of life that need to seriously look at further immunosuppression.
We can not live in fear of a slight drop in INR that causes severe symptoms.
It’s not an easy decision and many talks are still ongoing between myself and my Doctors as to the way forward.
I, like Texan Kelly, have now added an anti platelet in the hope this may lessen symptoms and lesson the need for immunosuppression.
Hi KellyInTexas, first have to say I love your bright and pretty photo!
That's me, the Tofino5 who was on Plavix, but concurrent with Eliquis (not Xarelto). Here's the thing, my APS specialist was trying to help my migraines, which were debilitating. That is why she trialed me with Eliquis. At my appointments she didn't speak positively about Xarelto as a treatment for APS. I know we're all different with our own needs, but this is what I'm doing and it's working.
Eliquis relieved my migraines 80%. I was also on aspirin, as I was all the years I was on warfarin. Anyway, I tried Plavix instead of aspirin, but the migraines responded better to aspirin. So I presently take Eliquis + aspirin.
I love your spinach idea. I too carried my Vit K dose of the day with me when I went out :-). It did make life easier.
Good luck to you. June will be here before you know it. Are you on the cancellation list?
Yes. I am on the cancellation list. Interesting about the aspirin! I’ve wondered about the aspirin -vs- the plavix. I like the idea that I can take a lesser amount of the aspirin if my INR shoots up out of range too high
I would also look into using Warfarin along with Rituximab. It is a Chemo drug that knocks out the immune system which in turn decimates APS antibody levels. This has reduced recurrent clots in all of the patients treated with the drug. I would take this medication if I was suffering from recurrent clots that high intensity Warfarin therapy could not stop. I think Plavix is the same thing as Aspirin. It's just Aspirin on steroids. It's an antiplatelet drug just like Aspirin is. It makes the red blood cells more slippery so that they can get through smaller arteries much easier. That's why it is good for patients with strokes and brain issues. It is better at fighting clots in the arteries than Warfarin is from what I've read. I would ask one of your doctors to look into the Rituximab as we here are not licensed physicians. W e can't really give you any medical advice other than to have you and your doctor's look into certain drugs and therapies after thoroughly researching them. I hope this helps. J
I test every couple of days. My INR has never been stable but to be honest it usually keeps going too high! It only needs drop to 3.4 and I have some kind of ‘episode’ though.
Yes I realise when it’s unstable I will get symptoms and we need a consistent level of anticoagulation.
This is why my haematologist tried me with fragmin to see if I could have more stability. Unfortunately my symptoms and chest pain and some long forgotten neuro symptoms returned very quickly on fragmin so I’ve now had to return to warfarin.
I now test every day at the moment. I do not like that.
Do you have a difference between the vein- and fingertest that is the same so you can rely on the CoaguChek XS result and know what your real value is?
If it goes too high; do you eat more greens like I do?
Then it must be difficult to have a high number and do not know what the real value is as the difference between the two readings are not consistent.
It is not exactly the same for me either when I am at 4.0 in vein-test but rather good and as I test every day I will not let the movements become too big. With a high Number it is more difficult to predict its co-value. We just have to test often when we are like this (like I am). Otherwise Warfarin does not work as anticoagulation.
Kerstin, ich bezahle dafür privat- keine Versicherung. Ich habe genug „ strips.“ Muss nicht Rückhalten- kann jeden Tag Blut probieren, und am meistens mache ich es so.
I can't add much on using warfarin and plavix together, but I was originally put on clopidogrel/plavix after stroke and later switched to warfarin, so I have been on both. I was also on both together during the changeover (while INR came into range) and that couple of weeks was the best I've felt since the stroke - in two years on warfarin I haven't felt that good, though there are odd days now that are ok. However, it was a short period and a lot of other stuff, medically, has gone on in the meantime, so I don't think it is significant.
On your questions:
1. No, it is short half-life so your blood levels will yo-yo. Also, similarly to splitting pills, you would be using an untested dose, no knowing what the effect would be but it is often the case that doses are non-linear i.e. half the dose is _not_ half the effect. Splitting pills is only really ok if there is a lower dose but you don't have the right pill, or for weight-based dosing, and even then it is iffy. Also, consider this is a trial, what will you do if taking a lower, untested, dose doesn't work - the doctor will always then say "try taking the right dose"!
2. It is common, and is written in some of the guidelines, to trade some INR for an anti-platelet, BUT that is assuming the total anticoagulation is enough in the first place. In your case it sounds like you are still symptomatic so you are adding more anti-coagulation but using a different drug. I would say IF it works THEN you could try to reduce INR a bit later and see if you can get the same result with less warfarin + plavix - but I would obviously plan that with the doctor and give it several months of being stable and happy first.
Couple of other things:
Yes, there is no antidote to plavix, or heparin or... - but the warfarin "antidote" (vit K) takes 24hrs to return clotting factors to normal, if you are bleeding out in front of your doctor it is not fast enough anyway. Vit K is really there to rapidly correct too-high INR with _risk_ of bleeding, due to warfarin's variable dosing and multitude of drug/diet/everything interactions - it is a solution to a problem other anticoagulants simply don't have.
Personally I found plavix to be very benign, no side effects, no difficult-to-stop bleeding or major bruising (have had both on warfarin), no stomach problems (it is supposed to be gentler than aspirin for that), I even had minor surgery while on it. If any doctor decides my INR is too low, I will argue for adding plavix back in instead (particularly as my INR has been in higher range at various times and it hasn't made any noticeable difference).
We are in an area of medicine where there is very little clinical evidence, not a lot of experience and a lot of differing opinion - no one can tell you if it will work, only you can find that by trying it. Even if there was trial data that showed 99% of patients were better on a given drug, you could still be part of the 1%, and we often forget to ask what happened to the ones it didn't work for.
I would try it, but as with any new drug, carefully under doctor supervision. If you aren't happy talk to the doctor and agree a plan for each "what-if" you are worried about.
Thank you for your very spot on reply. Very useful. I agree very much with what you say.
I still feel I’m quite new to all this, as I’ve only been diagnosed a year. I’ve not yet had a bleed, or been through any real problems of “ over anticoagulation” so I feel very wet behind the ears.
I’m curious if you felt so well during the short period of time you were on the dual therapy of plavix and warfarin, why not replicate this now?
My little town of Kerrville Texas is a know retirement community. It’s beautiful here, an oasis of sorts in Texas. Beautiful crystal clear lakes, clean open skies, and rolling green hills. My astute neurologist said it’s the perfect microcosm for a mini study of plavix and warfarin! He has all the patients at his fingertips as everyone in Kerrville is geriatric and his patient... and he just happens to have a lot of them on plavix and warfarin concurrently. He said at least 56 right now and none have had a bleed. The have harherningbof the arteries ( plaque build up in coroted arteries the arteries AND a fib. There’s the golden combo need.
My GP in this same town told me the exact same thing! He’s prescribing the same combo for the same conditions...no bleeds ...
And... they are not prothrombotic patients like we are.
Of course, it’s understood I am needing an INR of about 4 to stay asymptomatic unlike these other general population patients in their care. The point my doctors are making... is I should be SAFER on the dual therapy than they are despit a higher INR due to two factors:
1. I’m pro thrombotic throughout my entire body, not just in one place, at a heart valve
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Which self testing machine?
Self testing while on vacation out of the country
