I was diagnosed with Hughes syndrome and pulmonary hypertension 2 years ago after almost a year in hospital and numerous operations to remove blood clots.
One of my specialists recently spoke about changing me from Warfarin to Riveraxeban. As my INR has never been stable. My target is 3-4 and I usually take between 8mg and 12-mg, as well as heparin a lot of the time.
My professor replied to the specialist stating that it would be a very bad idea to switch me due to my "brittle APS"
My question is, has anybody else been told they have brittle APS? And can anybody explain what that means as I've had no luck with research online.
Many thanks
Amy
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Amylou86
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Hi, sorry never heard of 'brittle'. I have unstable APS, like you I couldnt get my Inr to stay at 3-4 range. This was 9 years ago, so I took clexane & asprin daily, until recently, I am now on trial for riveraxeban & asprin. So far - really good. Its trial & error with drugs, finding whats good for each of us, hope you get settled & stable soon.
My wife has been described as suffering from volatile APS and after years of clots and finally a stroke she was moved to clexane and has been stable for three years now. Not sure either are recognised terms for the condition but just a way for Doctors to explain that your APS is not stable. But others here understand the condition better than me and could tell you more.
Also of note as I am considering changing Is the trials so far have been on people with target inr of 2 to 3 as far as I know and it is not yet trialed and proven safe for people with higher inr needs. This probably as the dose strength would be higher and there is not an antidote licensed yet.
Welcome to our friendly site! Hope you will stay with us.
I agree what the others have said about "brittle" - he probably means you are unstable.
Here in Sweden most oral anticoagulants are not approved for this disease yet. No antidot. Warfarin is "classic" and does its job very good with this illness, if we manage to handle it. Here I have a CoaguChek XS and strips to use. We have to buy the machine but the strips are for free here.
I take a test at home every second day as I am also Lupus Anticoagulant. That is not Lupus but one of the 3 antibodies they test to find out if you have got APS (Sticky Blood). Without Lupus Anticoagulant in your blood it is much easier to get a stable value on Warfarin.
You just have to be sure that the fingerpricktest on your machine and the vein-test at a laboratory (taken within 4 hours) have the SAME DIFFERENCE. This you have to test several times to be sure you can rely on your machine-test result. I take a doubletest at a hospital-lab every second or third month but first i did it several times before I knew that the difference was the same. For me 0,7 - 1,1 and the machine-test value higher always. So if I test at home and have 4.0 in INR the real value that counts is perhaps 3.0. There can be a discrepence between 0,1 - 0,4 but that is ok.
My therapeutic range is today an INR of 3.2 - 3.8, but I feel best at 3.8. I get symptoms when i get down to 3.2. If I get under 3.0 I have to take a Fragmin-shot. I eat 5 mg of Warfarin and change the INR with my green vegetables. I also change the Warfarin-dose if I have to but not so often. I make notes of everything I do which is exstremely important.
My inr is ok today, when I first became sick I didn't refill my warfarin because I didn't think it was serious. I learned my lesson. I don't home test just yet, I am going to ask at my appointment this week. I did not know it was an option until recently. Will be easier on me.
Have they tried to perform surgery to fix your heart valves? I was reading that is how some Hughes patients get strokes and mini-strokes. It's from the leaking heart valves. You're on Warfarin though. So you're protected. I need to get an Echo done of my heart, but my doctors always fight me on it. They don't think it is necessary. I hate the healthcare system.
I have probably had a lot of micro-embolies. They are not seen on a Scan. I do an Echo with doppler every year and it is about the same, perhaps a little worse.
I have had a good Specialist for my bloodpressure (Professor in endochrinology actually) who understood to give me the right heart/bloodpressure-drugs in time several years ago.He is now retired but I still have the same good heart/bloodpressure drugs. But with Warfarin my bloodpressure is ok.
I had exstremely high bloodpressure quite suddenly before I started Warfarin. I am sure it was small PEs. The problem is that they do not see the small clots or PEs and there is also the importance of having a Specialist who knows that we have these fenomens.
I am not breathless as they always ask. I try to keep my Warfarin within the therapeutic range which is very important for me.
They are very afraid to do surgery on me ....... but why should they as they cheque my blood and heart very closely and I exercise as long as I am able to. I am divorced since several years and my children are grown-up so I can take care of myself. I have read a lot about this illness.
And this wonderful site where you learn so much and brush up you English and meet very nice people.
I must also have micro-clots in my lungs. I think that is why my lung function is so bad and there are no sigs of lung disease on CT scans. I wonder if you can have micro-clots without an elevated D-Dimer test, as mine was normal when they ran it a few weeks back. My breathing gets better with the inhalers, so maybe there is also an airway disease present. I get short of breath sometimes, and other times not so much. It seems to come in flare-ups. Like right now, no matter how many hours I sleep, even with sleeping meds, I am deathly tired and falling asleep. I get shortness of breath also when this happens to me. It could be my sleep apnea acting up, but who knows. I'm waiting for VQ scan of my lungs to check for chronic clots. I found out on Friday that the doctor never sent in the request, so I have to get on them on Monday. My lung function is 46 percent according to the tests. Any how, I'm glad you're not short of breath Kirsten. It doesn't feel good when you cannot breathe.
I hope you have Doctors around you who understand your situation. That is important.
I do not know if someone has taken a D-dimer on me. I have heart/lung specialists at Karolinska Hospital and they know me and my situation so I rely on them really.
I try to forget about it and do as much other things as I possibly can and i can do a lot of things. I know I am fortunate that I can breathe. Happy about that.
I wish you good health and a beautiful August in England!
Kirsten, some people have 19 percent lung function and still do not require oxygen. Everyone is so different when it comes to these diseases. Are you on any meds for the pulmonary hypertension. There are a lot of meds you can take for that as well. If yours is cause by the clots, they can do surgery to fix it. I know that APS is one of the causes of pulmonary hypertension because of recurrent asymptomatic pulmonary emboli. D-Dimer usually detects bigger clots. I'm not sure is tiny clots can raise the D-Dimer. I think we should all have a D-Dimer done every so often just to make sure there is no major clotting going on. I'm looking for a better Hematologist. Just hard to do being on government insurance. There is only a small list of doctors and specialists to choose from. Most have never even heard of APS.
Hi this happend to me last year i was sent to addenbrooks hospital and was told to give it ago but was warned i would not be able to be tested for INR levels as it works in a difrent way i did try it but had bad side affects and was put back on warfarin after 6months, My INR is never in range i hope somthing new will be availble soon as i am fed up having blood test twice a week for life, i take anything from30/50mg and never get a reading were they would like it to be. like you i am still getting clotts and PEs and whn admitted to hospital i have IV heparin .
That is a lot of Warfarin. I thought ten mgs was a lot. I think they consider 30 mgs to be Warfarin resistant. You might want to see about getting put onto injections. I hope your fee better.
Hi yes i have become warfarin resistant but unfortunatly i am allergic to the injections i can only have IV heparin when it goes very low i have learnt to live with it , and just have to try and carry on the best i can.
Do you have a Specialist of your APS and Lupus? If you are allergic to Warfarin how can they say you should continue with it .......!? You can not live as usual with a low INR!? Are your heart/lungs controlled so you do not have Pulmonary Hypertension or PEs. Have you done an Echo with doppler?
I am not allergic to warfarin its its sub cut heparin,
Unfortunatly i have lung problems ,pulmonary Hypertension and i still get PEs , I have very good consultants they do there best to take care of me , i am going into hospital 2nd sept for another portacath so they can get blood from me twice a week this will be my 5th in 4years they are not lasting as they get infected and clotted all the time but until they come up with somthing else there not much else they can do.My warfarin levels are very hard to manage .
Only you have Doctors around you that really know what this illness is about - too thick blood and the importance to keep the blood thinned without interruption !!
Good Luck on September 2 and let us hear how it goes for you.
From reading this site for years I note that those who are persistently unstable on warfarin are often moved to injectibles, such as the low molecular weight heprin, fragmin and the like. Everyone's first reaction to the thought of sticking a needle into their stomach on a daily basis is "WHAT??? NO WAY!" And this aversion is often not limited to patients as doctors who are not experienced with a number of patients who successfully make this transition, also try to avoid such meds,
But i did this when I bridged to and from warfarin for my hip replacement. And really. Its no big deal. Really. In fact, I enjoyed being able to eat liver and onions and all the kale I wanted.
Your doctor may not suggest one of the injectible med options. But should that suggestion come up, don't rule it out on the "Yeach!" factor. Its not as difficult or painful as it sounds. And with such a short half life the thinning properties dissipate quickly.
I have also been on this site for years and read almost every day about what you say.
If I did not have the possibility to selftest every second day and have those Specialists behind my back as I have, I could not be on Warfarin. When i am under an INR of 3.0 I take a Fragminshot and that is very easy and I have no marks from it at all but I inject exstremely slowly as APsnotFab has taught me.
I wonder if it is the price or something. I will try to figure it out.
Yes,im good. I have recovered from my exhausting hike up theWest Highland Way. I still think my problem was not the distance but the heat. Im standing there with -not an exaggeration!-- a pack you could wring sweat out of and a local says" Ahh lassies! isn't this weather grand?!" and i force a smile to say "yeah. Just like home. And do not say out loud the next thought which is " and that is precisely why I flew over here to do my hiking!"
But im good and warfarin is still my best medical friend. I know I'm fortunate to have a system that responds so well to warfarin.
I have been injecting insulin for three months now. I am used to the needle. If I had to go on Fragmin, I would be tearing up my stomach really bad as I already inject there a few times a week. I still can't just jab myself. My hand always hesitates, no matter how tough I think I am. I usually just slowly ease it in, then leave it there for 10 seconds, then slowly ease the needle back out. Some people use an ice cube to numb the area up, but I prefer to just do it and get it over with. I would definitely prefer a needle jab over Warfarin. It is just inject and forget about it. You don't have to worry about your INR going too high, or dropping too low. The only down side is that you have to inject twice a day. I hate twice a day medications.
They use the term "brittle" a lot in the diabetic population. Some diabetics can eat an ice cube and their blood sugar will go up to 400. Then it will drop back down to 40 the same day. That is what brittle means. It means unstable. I guess some people have an unstable INR. I'm going through that right now. I am almost on 10 mgs of Warfarin daily and my INR is still 2.1. I will have it checked again next week; and if it continues to stay unstable, I will be switching to Xarelto. I know for a fact they aren't going to give me Lovenox, Heparin, or Clexane here in the states. It is like 3000 dollars a month. I'm also not so sure about the home testing machine. I wish there was just a one pill fix all for this disease. Any how, welcome to our friendly site. You will receive a lot knowledgeable advice and good support from all on the members of this site. Hang in there. We are all in this together!
I have had unstable INR's on Warfarin. There are alternate sites for injecting such as thigh and shoulder blades (needs someone to give it to you here-bit tricky on your own) if tummy gets too lumpy/hard. I did have a chart on injection sites given to me but I think I threw it out after starting the Rivaroxaban. If you inject into a lump it will sometimes leak out and not have the full dose.
I have been unstable on warfarin since I started taking it! It's almost a year now! How long shud I wait to suggest a differs medicine or something different! I feel best wen my INR is 3.7! I went up to 5.5 once, but that was only once! I'm usually 2.1-2.5 ! I take 10 mg warfarin 4 days a week, was on 15 mg 3 days a week, but wen I went up to 5.5 my doc made me do 10 mg 4 times a week, 15 mg 2 times a week, and 12.5 mg once a week! I'll go Monday for my INR test to c how it is with the 12.5 once a week! I'm just tired of it all! Here in USA it's very difficult to have APS! Hardly any doc has heard of it and if they say they've heard of it, you probably know more about it than he does! Unless U get a specialist in APS it's difficult here! I've never heard of brittle b4 either! Welcome to this forum and I hope we hear from u again soon! We all have something in common and r here to help! If I can be of any help feel fre to ask! Good luck and hope you feel better soon! Godspeed
Amylou, you might want to look at my post further down, in reply to APSnotFab. Re brittle, they use it to describe chronic conditions that are unstable and need to be handled with care think FRAGILE.
I agree that if it doesn't seem to be the wisest decision to put someone who has a brittle(fragile) condition onto a drug which, in comparison to warfarin or LMWH , we know very little about.
The RAPS trial in APS is still ongoing and actively recruiting for anyone who's interested in joining. Patients have to have a positive diagnosis of APS and have had at least 1 VTE, currently be on but it excludes people who've had clots whilst on warfarin or any of the other NOACs,people who also need to have aspirin and clopidogrel and certain other high risk groups. INR range is 2-3, which is perhaps why they still haven't recruited their target 150 patients since 2014.
Regarding both rivaroxaban (Xarelto) and self testing, the trial (Rocket-AF) comparing warfarin and rivaroxaban for stroke prevention in people with Atrial Fibrillation on which the decision to license the drug for that indication , both in the USA and Europe in 2011has been shrouded in distrust by some authorities and Doctors. At the beginning, many said that it was impossible to say that rivaroxaban was as effective and as safe as warfarin for stroke prevention because the warfarin group patients had INR's which were in range only 55% of the time, meaning they were at higher risk of having a stroke or TIA.
The most recent controversy this year has to do with the fact that in 2014 the manufacturer, Alere, recalled the particular Point of care (SELF) testing device (INRatio/INRatio2) which was used to monitor the INR of the patients, via the FDA.
The company informed users in its medical device correction that patients with certain conditions—including anemia with a hematocrit (HCT blood test reusult) less than 30%, unusual bleeding or bruising, conditions associated with elevated fibrinogen levels, and conditions involving inflamation—should not be tested with the system because of the possibility of obtaining INR results lower than would be expected with an automated, laboratory INR test. The announcement, which came in the form of an FDA recall notice, also noted that the instructions for optimal use recommend using the test in patients with a hematocrit (HCT) of 30% to 55%.
The concern is that a "false" low INR reading could prompt an inappropriately high warfarin dose and, in turn, induce excess bleeding. This would inadvertently lead to rivaroxaban appearing safer than warfarin in the ROCKET AF study
If you google "controversy around Rocket-AF trial" there are lots of other results other than the one I've used above.
Reading this and looking at Lure2 posts it seems that their might be a problem with the accuracy of self testing devices. The ones in the study above were reading too low, whilst Lure2's device seems to read too high. I wonder how they validate these machines before they bring them to the marketplace?
Whilst searching on the government clinical trials site for GAPS trial you mentioned (which I couldn't find) I found this trial;An Observational Post-Authorization Safety Specialist Cohort Event Monitoring Study (SCEM) to Monitor the Safety and Utilization of Rivaroxaban (Xarelto®).
The trial is being lead by Professor Saad Shakir from the UK Drug Safety Research Unit (DSRU) but is only for people with conditions for which the drug has already been licensed.
Like you I was told I couldnt be a candicate for Rivaroxaban, as my APS was to unstable. My INR was all over the place, target range 3.5 - 4, as I had a liver condition I was taken off warfarin & put on daily clexane, asprin & clopidogrel. This was for 9 years until May of this year, Prof Hunt has now put me on a trial for Rivaroxaban, asprin & clopydogrel - so far, so good. She never mentioned it was not licensed for people like us but I do trust her totally.
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