Sticky Blood-Hughes Syndrome Support

Can you clot even if taking Rivaroxabin daily?

Hi,

Has anybody out there ever had a clot whilst taking rivaroxabin? My haematologist assures me I cannot clot when on this drug but I believe that last week I had another blood clot in my lungs whilst on rivaroxabin due to the pain that I now recognise (always thought it was indigestion but now know it is pulmonary embolii). I called my haematologist who inisisted that it wouldnt be a clot and implied that I was over reacting/ over anxious. I now feel I cannot call her if I get chest pain and she’s insisted I do t go to A&E (I’ve been twice to A&E in past and both times clots were there!! So they put me back n Rivaroxabin and 2 months later I’ve felt the pain again but it dissipated overnight)

So it would be really good to know if there’s a rivaroxabin patient out there who has continued to clot regardless of taking this drug.

Many thanks

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I believe I have heard of others who have had clots. What INR range where you on before starting that drug? The RAPS trial states that you should only be taking it if you have had a venus clot and needed INR 2-3. Any higher and its not suitable as is if you have had an arterial clot.

The fact that you have re-clotted already on this drug would suggest that you should not be on it. If you have ANY suspect symptoms please disregard what that Dr has said and go straight to A&E immediately! I do not want to scare you but PE's can be fatal!!

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Hi! Learning so much on this forum & thank you for all the wonderful advice. How can you tell if you've had a venous or arterial clot?

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Venus = Veins like a DVT in the deep veins of the arm or leg. Arterial = Arteries like a stroke in the brain or a heart attack.

With DVT's you often get pain, redness and heat and you must treat it seriously as small pieces can break off and move to the lungs causing a PE = Pulmonary Embolism - thats serious and is called a VTE. You would then get shortness of breath, difficulty breathing and often pain in the lung/chest area. With Stroke or MI Im sure you know what the symptoms can be.

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Thanks for the info. So, if you had a PE, how do you determine whether it's venous or arterial?

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Interesting?

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I clotted on Warfarin and Clexane and have been on RIvaroxaban for a few years now. I know it takes time for clots to dissipate and even my last MRI in December there was permanent scarring and areas of collapse from my PE's 5 years ago. I was very wary of going on to Rivaroxaban but I didn't really feel I had a choice-take something or die- were my options! A few months after starting I *thought* I had another PE but only the previous ones were showing up on the VQ scan. It could have been stress as I was watching and feeling every symptom wondering if there was another clot-and it probably took a year before I stopped worrying! . My Haem then added 100mg Aspirin (as an anti platelet) to the mix and I have been good ever since. For me this combination has worked wonders.

I take 20mg/day at night as my therapeutic dose and the only time I had probs was in hospital last year where they were only giving me 10mg.

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Very interesting. Thank you Ozchick. Good of her to listen and to add Aspirin to the mix.

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Clotia,

I have been taking Apixaban another NOAC anticoagulant med like Rivaroxabin since Dec 2016 and have been trying to get off it ever since because I know I'm still experiencing blood clots.

I have dvt type pain in my legs regularly, which can start in the back of the calf, then the pain moves to my thigh and then into my groin. A short while after these dvt pains, I get what I call my "bumps through the chest" (the clots passing thru my heart and onto my lungs), my lungs then become sore when I breathe in and then they can become full of mucus /fluid depending on how many clots have passed to my lungs or how big they are etc. My heart rates then become even more tachycardic than usual and my breathlessness increases.

Like you I am being dismissed by my haematologist and told that I must stay on apixaban. I used to need an INR of 3-4 minutes when taking warfarin to remain therapeutic but these new anticoagulants only have the equivalent clotting time of 2-2.5 minutes.

I do believe that I'm producing lots of smaller clots, possibly in the superficial leg veins as opposed to large DVTs. I have incompetent veins and varicose veins in my legs now (caused by my blocked IVC Filter, which was recently removed) and so blood will back flow in these veins which most likely adds to the chance of my getting SVTs.

I am still fighting to change my anticoagulant medication because if I'm producing clots in my legs, then I can be producing clots elsewhere in my body and I really don't want to have more TIAs, or god forbid a full blown stroke!

Like you I know exactly what having a clot in my legs. lungs and brain feels like because I've experienced them so many times, I just wish that doctors would stop playing god and instead start listening to what their patients are telling them. We know our bodies and we know when something isn't right.

Like you my haematologist has tried to blame my symptoms on anxiety but I know that anxiety has nothing to do with what I'm experiencing. The last doctor who told me that I'd "had a little panic attack" could have killed me. I insisted that the bumps through the chest I'd just experienced, followed by being unable to breathe had nothing to do with being anxious because I was laughing and chatting with another patient when it happened. The doctor then decided that I could have an ultrasound of my legs, "just to be on the safe side" he said. It turned out that both my groins were full of dvts. I then had to stay lying down and very still and was sent to have an emergency procedure to implant an IVC Filter (clot catcher) in my abdomen.

I cannot believe that your haematologist has told you not to go to A&E, that is outrageous! I wonder if we have the same haematologist, maybe message me directly and let me know who your hematologist is.

Throughout 2016 and during most of 2017, I repeatedly told the doctors and specialists who were treating me, what I knew was wrong with me. They thought they knew better and because of their refusal to believe the patient, I was left to suffer in the most acute pain and was also so desperately unwell that I became house bound for over a year and a half.

It turned out that I was right about "absolutely everything". Everything I'd told the doctors was proved to be perfectly accurate but because the doctors refused to believe me, I suffered a further twenty four months worth of agony and illness. I'm still waiting for an apology from the hospital!

If you are not happy taking Rivaroxabin and feel you are still clotting then why not ask your GP to refer you to a different haematologist. It's so unacceptable that we feel unable to even to try to engage in a two way discussion about our treatment because we know that we will be belittled and told we are either anxious or that its all in our heads.

Maybe we should gang up on these haematologists who keep dismissing and undermining us?

I wonder, if we could find enough people, who like us feel that they are still clotting on these new anticoagulants, then maybe these haematologists would have to sit up and listen. It's easy for a specialist to dismiss a single patient and try to blame their symptoms on anxiety but they would have to take notice, if they're faced with multiple patients all experiencing the same clotting symptoms?

Might be worth a try? 😯Claire

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Hi Claire,

I wonder if you today have left that Hematologist who said your symptoms were because of your ANXIETY. Many of us have been introduced to those Doctors.

They do not understand our illness at all.

You sound like a very wise woman and I hope you find your Specialist of autoimmun illnesses who knows this illness and those connected with it as APS is a "follower or a cousin" and are very close to Sjögrens, Thyroidea.

We have to be very strong and healthy people to live with this illness.

Good Luck!

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Hi Claire

Yours is a very interesting reply and I'm sorry to hear that you've had such a hard time convincing them of what you knew all along. This is exactly my fear too.

So, I'm going to move on and dump this haematologist. I'm not sure how to find a specialist who has experience primarily of pulminary emboli and APLS though.

I live in Wiltshire so let me know if you do too as maybe it's the same one! And people need to be warned. Not sure how to email you privately. But I bet there are loads of Consultants out there who are dismissing their patients symptoms but I guess we can't name them on here?

All the best

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Hi Clotia, I live in Kent and my haematologist is based in London, so definitely not the same haematologist as you. I think there must be an epidemic of "we won't listen to our patients and we will dismiss all their symptoms to being caused by anxiety" here in the UK and clearly it is spreading amongst the haematological specialists, I do believe that this epidemic has also been affecting many haematologists in the USA too!😉

I jest but in truth it isn't remotely funny and I actually find it frightening that so many patients who have experienced an are still experiencing serious clotting issues, are being dismissed and demoralised by the very people who are responsible for their care!

Should we not name them though?

I have been belittled, humiliated and forced into taking a anticoagulant medication that is not keeping me therapeutic by my haematologist and if I don't tell the truth about who did this to me, then how many other patients will end up like us? Feeling too scared to challenge our doctors/specialists for fear they will get angry with us, or that they will belittle us and tell us we are just anxious, or that it's all in our heads!

We are the ones who could have another pulmonary embolism, TIA, or God forbid a full blown stroke, if we are not adequately anticoagulatied and yet we are not even being given the decency of having a two sided conversation regarding what treatment we should take. Instead we are being "told" what anticoagulant drug we have to take and then when we try to explain to our haematologist that we are still clotting on this new drug, we are not being listened to.

I don't believe that these new anticoagulant medication have been around long enough for any doctor /specialist to state with all certainty that we will not clot when taking them.

In 2005 I had a "permanent" IVC Filter implanted because both my groins were full of dvts. I was told it was an emergency situation and that the filter was perfectly safe and would actually protect me from getting any life threatening size pulmonary embolisms in the future.

Fast forward twelve years and I have just had to have my IVC Filter removed. What should have been a two hour operation ended up taking five hours because as the surgeon said, "it was the worst case of filter erosion, embedding, scarring and clotting he had ever seen!"

My entire venous system through my abdomen has been altered and compromised, where the returning blood had to find a way around my blocked IVC, to get back to my heart and lungs.

I have suffered from acute abdominal pain for the past two years and now have varicose and incompetent veins in both my legs, which not only cause me constant pain, they also increase my chances of svts and dvts due to the back flow of blood.

The blocked filter raised my chances of getting dvts by another 40% during those twelve years and I know that I've been throwing up multiple sprays of PEs during those years too, as my IVC vein gradually became more and more blocked.

I now suffer from acute breathlessness and excessively high heart rates, which are currently under investigation, probably caused by the clotting Issues that the blocked filter has caused me over the years.

My point here is, that IVC Filters were seen as a really positive addition in preventing PEs for many years, until it begun to become apparent that they actually came with multiple complications, some of which are life threatening!

Because doctors were so convinced that IVC Filters were a positive thing, especially in those patients who couldn't tolerate anticoagulant medications, they didn't arrange for any follow up checks for the patients they had implanted them in. There was no way of knowing for sure therefore, just how many of their patients went on to experiencing multiple complications with their filters.

It's now 2018 and they no longer implant "permanent" IVC Filters because they now know that they are NOT safe!

The same thing is also currentlyoccurring with pelvic floor meshes used to help incontinence. Many patients have been left in agony from their meshes, meshes that had hardly any testing prior to putting them into humans.

Likewise, these new types of anticoagulant drugs have not been around long enough for anyone to be able to say with all certainty, that we will not clot if we take them, especially if we have sticky blood. Yes there have been some trials on the suitability of these new anticoagulant medications but I don't believe that they will know for certain how affective they can be, until they have been taken by patients for many years to come.

If we are going to our haematologists and telling them that we know we are still clotting taking these new drugs, surely they should be listening to us?! How else can they ever be sure if these new drugs are safe for patients with APS and sticky blood conditions, if they refuse to listen to their patients?

I've been a guinea-pig once with my IVC Filter and I do not want to be a guinea-pig again with these new anticoagulant drugs.

What can I do though, if my haematologist refuses to even have a conversation with me about my choice of anticoagulant meds?

Claire 😖

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Hi leakeadea Im truly sorry you are and have had such a bad experience. As with many medical devices, they are deemed fit and proper until evidence such as your experience started to filter through in numbers and then studies force a change in mind, alterations, or removal from the market. Unless you can prove that the manufactures had prior knowledge that the device was not fit for purpose or perhaps fiddled studies in order to get it on the market, Im not sure there will be much that can be done. I would suggest you do some research to find out how many other complaints there have been and if it is a particular manufacturer. If so there may be a class action in place that you can join.

As far as your anticoagulant is concerned, there is something you can do there. Rivaroxaban is the ONLY DOAC that has been tested for APS, the study is under Pinned Posts to the top right of this page. A person such as yourself, according to the guidelines of that study should NOT be on it! You have had multiple clots and you should be on warfarin only. Is there a reason why you cant be on that drug?

We do not allow naming and shaming on this Forum but we can advise as to what you can do if you are unhappy with the care you have received.

1, You should write to the Dr you are unhappy with and state clearly what your issues are. Send it to their secretary at the Hospital that you saw them at. Email it with a copy CC'd to PALS of the same Hospital and send a hard copy to the Dr's main address.

2. State clearly the problems you have experienced with dates and names of anyone else that is involved. State what you were told if it helps to back up your claim and what the effect of following any instructions was.

3. Clearly state what you expect to get as an outcome from writing to the Dr (and Hospital). Put a date when you expect a reply by.

4. If you feel strongly that you have suffered physically from the care you have received either through negligence, ignorance or just plain arrogance, then you should consider speaking or receiving advice from a specialist solicitor.

5. You could consider writing to the British Society of Haematology if you believe that there is a systemic issue with Haematologists in the treatment of patients with DOAC's and APS.

5. You could also consider writing to the authors of the RAPS trial to inform them of your experience. If they are not being fed back information which may help them, then it may be more difficult for them to fully appreciate all aspects of the effects of this medication.

We have a list under Pinned Posts of a patient recommended specialists. You should remember that what one patient experiences is not always what another does but it is a guide to Dr's that have knowledge and at least have APS patients. As you live in Kent you may consider that coming to London and having a private appointment may be money well spent to at least get the base of what your protocol should be and then hope your GP can continue with any prescribing.

I cant advise you what to do, only give you information of options open to you. Im just so sorry that you are in this situation and I wish you the best of luck in finding a way forward. x

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Dear APsnotFab,

Thank you so much for your advice.

I have raised a complaint with the hospital following the appalling treatment I received during my recent admission to remove my IVC Filter. This complaint will include the very poor and belittling treatment I received from my thrombosis/heamatologist specialist, when she visited me on the ward.

My vascular surgeon has already admitted to the multiple errors that were made during my admission to remove my IVC Filter and has apologised for them. I don't see the Thrombosis Team until the end of March however and so I won't know until then whether I will receive an apology, or whether I will finally be allowed to have a two sided conversation concerning my on going choice of anticoagulant medication.

I will private message you regarding who my heamatologist is. Once again thank you so much for your help and support. Claire

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I just again ask both of you- are you on a proper therapeutic dose of the medication? Or is your Haem giving you lower dose 'to be on the safe side? (but just as useless as a low INR to control clotting) Took about 3-4 weeks to get to feel OK again after all the complications of the surgery and incorrect dose.

I'm not disputing either of you because everyone reacts so differently to the same drug. It's a real Lottery draw to finally get the treatment right!

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I've no idea if I'm on the correct dose. I fear she might hit the roof if I asked her! Or make out I'm anxious again.

I've never needed to self test as they put me straight onto Xeralto 3 years ago.

I am considered as an easy going laid back pleaser by people who know me - not a whinger or a hypochondriac so I was shocked by the way she spoke to me.

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Don't worry if they hit the roof-they're getting paid and you just have to remain calm. If you're not on any anti coags the usual dose is 15mg 2X daily for 2 weeks and then 20mg X once daily.

......or she could have been having a bad day-it happens! ;)

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I had a stroke after taking zeralto for a year now back on warfarin.

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Hi Sanpap,

I have read from your previous posts and that you mentioned that your selftesting machine "was wrong".

It is important that we keep a rather high and stable level of the INR when the oral anticoagulant drugs do not work for us.

So I wonder if you are Lupus Anticoagulant as then the numbers on the testmachine can be false and differ a lot from the vein value at the lab.

Is that so? My numbers differ from for ex an INR of 5.0 on my CoaguChekXS (your machine also?) to 4.0 in the vein at the lab a couple of hours later.

I know the Doctors do not want you to go very high but if you can get the INR stable by testing rather often at home you could feel much better as we do not bleed from APS but clot very easily.

Try get get a Specialist of autoimmun illnesses who has had patients like you before and who really is willing and capable to help you with this very difficult problem; to thin our blood so it will not form clots etc.

Good Luck!

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Sanpap, thank you for letting me know. This is what I thought, that it is still possible to clot whilst taking Xeralto/Rivaroxabin. My haematologist insists that I can't clot ever on xeralto , that the pain in my chest last week was not a blood clot and that I need to get my anxiety in check....really rather patronising which is a shame because I quite liked her up until last week!

I need to do some homework and ask to be referred to a specialist who has a lot of experience in APLS, lung clots and xeralto.

Since posting this specific question and after talking to a friend who is a haematologist, I have discovered that APS patients in the NHS have a bad name for themselves, rather like people who suffer from fibromyalgia do too. Apparently, the majority of us sufferers tend to be oddballs and are over sensitive to our symptoms!! I find this predisposition disheartening to say the least. I have a high pain threshold and am paranoid about being called a hypochondriac and being a time waster. It took me a lot to go into A&E each time and to let them know I was having trouble breathing and had terrible pain in my chest yet again. Each time A&E made me promise I'd come in sooner and each time my consultant told me not to bother going to A&E, to ignore their advice and just to call her.

I really appreciate the feedback from you all on this site. Thank you, it's given me the confidence to go over my Consultants head and to find somebody who not only listens to me but also believes me too. You have backed me up!

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I wonder what Prof. Hughes would say to those so called specialists that stereotype APS and for that matter Fibromyalgia patients

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I hear you. We all hear you. Sorry that your current heme does not. Your heme’s treatment is obviously not working. His refusal to listen to you is wrong. Ignoring physical evidence that your reported symptoms are real. and instead, insisting that “its all in your head due to anxiety” is wrong.

I’m going to turn the table and offer an idea that is equally wrong. ( And I am acknowledging this is inappropriate and wrong, but I feel a need to write it. Administrators -delete away if you feel you should:

I wonder what anxiety or stress that doctor suffers from that leads him to dismiss hard evidence and patient reports that indicate the original treatment needs tweaking? Is that doc under too much stress? Needs counseling so as to calm down and process unwanted information?

just saying....as my grandfather used to say “sauce for the goose is sauce for the gander.”

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Hi Gina - Im not going to delete anything as that was a legitimate theory, especially the way our over stretched NHS is at the moment. I suspect, frankly, its more pressure from suits to put people on DOAC's because they have now done the sums and realised its cheaper to give people pills, that are coming down in price then run anticoagulation clinics (this is a complete turn around from 3 years ago when they were all saying DOAC's were too expensive and would take years to be implemented). I also suggest that the dose is being regulated from pure AF guidelines, as thats what most anticoagulation patients come from, and not geared to individual needs like an APS patient, because they probably only have one or two and don't have the experience and knowledge to tinker with the dose!

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Our separate nations each have their own financial barriors to effective treatment - which must be individualized if it is to be effective, and, therefore, cost efficient! A whole smorgasboard of issues are swiirling around my life and thoughts — from politics, to health care, to ethics and theology — and I see commonalities: that the Western model calls for a solution involving (as a functonal med doc describes,) “name, blame and tame.” Except our world has become too complicated for that approach. Everthing is too complicaed and interconnected. Simple answers don't’ work anymore. But so many Westerners are so wedded to that “name, blame and tame” model. Arrrgh!

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Hi Gina,

I did not know you used "smorgasboard" in the US. It is a Swedish word and is spelled in Swedish like "smörgåsbord". I means a great number of often cold dishes and is not healthy at all.

Kerstin

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We use smorgasboard as a word to describe a number of related things -from food, to purchase options on a huge used car store, etc. English is notorious for appropriating words from other languages.

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Hi Clotia. Prior to being anticoagulated I have, over the years, 3 episodes of pulmonary emboli. The sensation/pain is unique. So I would trust yourself on this one. I would also take yourself off to A&E asap - I think you are going to have to ignore your doctor on this one - and say that you believe you have/had very recently had another clot. Let them investigate. If you have had a clot then you absolutely need to be on the right dose of anticoagulants, and be properly monitored. Will you post and say how things go for you?

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Thank you, Mrs Mouse. Again, another interesting story backing me up. Helps me to believe in myself. I hear you, I will def take myself into A&E if there is another occurrence.

The only time I felt I had a clot whilst taking Rivaroxabin was a couple of weeks ago. The recognisable pain grew after I had taken oil of oregano for the first time (trying to improve my immune system through herbal medicine) and part of me wondered whether this had anything to do with it. I've never taken oil of oregano since btw. Regardless, I recognised the pain and that is what made me contact the consultant that last time.

If another clot ever occurs, I'll go to A&E and keep you posted. Many thanks x

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Well, not wishing to worry you, but what I was suggesting is that you go to A&E now. If you have indeed - just this past week - had a clot or clots whilst on Rivaroxaban then you may not be out of the woods. And potentially your dose/the drug isn't correct for you and you risk another clot. I have to re-iterate what APsnotFab said; clots can be fatal.

I

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Clotia If your consultant EVER says that to you again, simply say to her, "Are you prepared to take personal responsibility for what happens to me if I DONT go to A&E"? Then see what she says! I doubt very much unless her ego is bigger than her professional insurance, she will say yes! So if you get the evasive answer, simply say, you will be going.

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If I were you I would try to find your Specialist of autoimmun illnesses who had had patients like you before and knows how to treat you!

You have got good answers on your question from APsnotFab and others who you should trust.

Best wishes and Good Luck!

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yes you can, i was on Rivaroxabin, and a cloth slowly formed in my leg, long story short, it dammaged the veins in my leg, and now am back on warfarin.

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Poor you! Thank you for telling me.

It’s reinforcong my point and I’ll believe you over this particular Consultant I have next time I have chest pain.

My pain went after a day so I decided not to go into A&E this time and I’ve been fine ever since.

I’m looking for a a consultant near Salisbury area who specialises in APLS and specifically pulmonary embolii. Hoping my GP can point me in the right direction the next time I go see him.

If anybody knows of such a specialist in South West England please could you let me know. Many thanks for all of your support.

Claudia

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You may want to make this request a post on its own. Good luck

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