Last February (2014) at the age of 37 I suffered massive bilateral PE. I had no previous serious health issues. I was rushed to A&E and immediately thrombolysed. By all accounts I should have died.
After a few weeks of recuperation I was allowed home and placed on Rivaroxaban for a fixed period of 6 months. At the time of my discharge from hospital I don't think many of the blood tests that were supposed to have happened had been done (like the lupus anticoagulant test)
I was advised by my Cardiology consultant a few months later that after this initial 6-month period of being on Rivaroxaban they advised that I should be taken off RIvaroxaban for a period of time and then re-tested to check for abnormalities.
When that 6 month period came around (October/November 2014) I had not been referred to a haematologist like I had been lead to expect and I started chasing my GP for answers. Only recently after months of chasing (late February 2015) have I had some progress.
My GP received a letter from the Cardiology Consultant stating that they no longer supported their initial advice! It now turns out that at the time of my initial consultation I had actually tested positive for lupus anticoagulant and that had they known at the time they would have placed me on Warfarin.
They have also stated that due to my age, the severity of my PEs and my family history (my cousin has Hughes Syndrome) that I should be on anticoagulants for life. This came as a bit of a shock
I have asked my GP to be referred to a consulting haematologist as I am very confused as to what is actually wrong with me. I asked my at the time GP if this news meant I had Lupus, which he confirmed was the case, but after reading things on-line I'm not so sure as lupus anticoagulant positive does not always mean the sufferer as full-blown Lupus? From my understanding my positive test result points towards APS/Hughes rather than full blown Lupus?
I'm terribly worried that I'm either poorly or misdiagnosed and that I may be on the wrong drugs for my potential illness. I have learnt from this site and others that Rivaroxaban is not really recommended for APS sufferers because trials are still ongoing, so I am fearful that I have been an inadvertent guinea pig for a year.
On the flip-side I have been lucky enough to have no recognisable side effects from being on Rivaroxaban and it very much suits my lifestyle. Just being in the hospital for two weeks showed me how many people on Warfarin are on the wrong dose.
I have little confidence in my GP and the consultants I have been referred to before now, and although I am hoping that talking to a haematologist will clear things up a lot I'm honestly a bit lost and not sure where to turn.
Any advice/information gratefully received.
Richard
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richardtvaughan
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Hi there and welcome, firstly it is a misleading name for the test. You do indeed have Hughes Syndrome/APS. Please read through our charity website very carefully and then perhaps you can email the GP, (using secretary's email address), but marked for attention of GP, send them the charity website, prior to your next appointment and also I have pulled out this link from the charity website, of recommended consultants for your GP. Your GP can then be guided by a full expert hughes-syndrome.org/
Also these are the blood tests to be done, but take the forms to hospital, as it is best that your samples do not sit around as the tests are a bit time sensitive. hughes-syndrome.org/about-h...
If you feel that you get nowhere with GP, take all your NHS test results and self refer privately to London Bridge, but also prior to this get your GP to test your Thyroid, and also levels of Vitamin D, B12 and iron, as it is good to see the whole picture. Some of us go to London Bridge as well as using the NHS, but if your GP refers you to the right place off the list, things should improve for you, you certainly need a swift result, and email them with all the info prior to your appointment and if necessary take your best friend, colleague etc to be your advocate!
This is a great forum, and you will find plenty of support on here from fellow sufferers/members. Let us know where you are located, as this can also help to get you the right help.
I have all the antibodies there are for APS incl Lupus Anticoagulant and I have APS and have been on Warfarin now for almost 4 years with very good result.
I selftest and know the INR can change from day to day. We usually feel good at an INR around 3.5 or even higher.
We have too thick blood. When we are well and enough anticoagulated we feel a lot better and the symptoms lighten or will go away totally.
Two things are important; 1.) to have an APS-specialist 2.) to be correct and stable anticoagulated.
When we have started warfarin it is very difficult to get a correct answer on the bloodsample of the Lupus Anticoagulant. They do not take it on me any more. But you have already taken the bloodsample and it was positive.
Best wishes and good luck from Kerstin in Stockholm
Hi Richard. Reading your story brought about a sense of deja vu!. I had similar PEs in the seventies, apparently down to less than half of one lung working and wife told not to expect me to last the night.
Well 40 odd years on and I'm still around. In those days you went on massive doses of prednisolone, and warfarin. I was/am also Lupus Anticoagulant positive. Indeed, that was one of the names (a misnomer from the start) of the condition that later became known as Hughes Syndrome, or Antiphospholipid Syndrome/APS (or for the really uneducated- sticky blood). It does not mean you have Lupus.
You don't say where you are but it seems clear that you need to find someone who knows about Hughes/APS and frankly, if you are in UK and can afford it, you can self-refer to Prof Hughes of one of the other specalists at The London Bridge. Get your bloods done by your GP in advance if possible. Alternatively the HSF site has lists of doctors who understand Hughes/APS and to who you could/should get referred to.
Being told that you are likely to be on warfarin for life did depress me at the start, but 40 years on I don't worry about it
By the by, there are far fewer men diagnosed with Hughes than there are women, probably half a dozen or so here of the top of my head
Do get all the tests done by GP! as mentioned above, this will save you a lot of money, unless of course you have private healthcare insurance. Professor Hughes himself has the longest list but there are others there, and most also work at St Thomas' Hospital also.
Good luck. I hope you are seen by a knowledgable specialist soon. When I was diagnosed in 2001, after a series of what I was calling "panic attacks" but which MRIs proved to be mini strokes, I was totally freaked out by the prospect of taking "killer coumadin" for life!
But one doctor -- not my hematologist, but an OB/GYN who may count as the friendliest, nicest doctor ever! -- explained that because warfarin has been prescribed for so many years "we know all of its side effects. Which are none excepting the expected results of thin blood. And it is unusual in that it does only one thing: it lowers platelet efficacy. And that's it. It is so rare to have a medicine that does not have a lot of side effects and consequences for other bodily systems, but warfarin is one -- and one of the best actually!"
And indeed, I have found warfarin to be my best friend. I know many other patients seem to do better on the injectibles (which are great in that you can eat anything!) -- but when I started warfarin it was like someone pushing the "Off" button on all my symptoms. I had been taking Plaquanel for a couple of weeks before the warfarin, and although it helped a teeny, teeey, tiny bit to thin my blood it did not work as wonderfully as warfarin.
As time passed I noted other problems which may be APS related, or may be just aging (now 60) -- but honestly, I am day-to-day healthier then most of my friends and acquaintances of the same age.
Don't panic too much about the Rivaroxaban-I've been on it for about a year now after 1) couldn't keep a stable INR on Warfarin, 2) developed a DVT while injecting Clexane as well as TIA so this is a drug that suits me. Plaquenil did't seem to make a difference after 4 months of taking it (except put on weight!) and I have an added 100mg aspirin daily. If it hasn't any side effects for you don't stop taking it-at least until you see someone knowledgeable in this.
Richard, If you work in London - as the above said go to the Lupus Centre. I am under Professor Khamashta - he works in the next office to Graham Hughes (whose waiting list was 8 months) and Prof K's was 6 weeks. I was also confused and thought I had Lupus (also live in the South East, and work in a GP surgery!) as my Haematologist kept saying Lupus - But Prof K said I definitely don't have lupus (Like you, I had multiple bilateral PE's and pleurisy) - so many clots the hospital said they were surprised I had any oxygen going through me. We paid for me to see Prof K privately - best £220 ever spent. Now he sees me on the NHS. He recently tested my daughter as she has CFS and although he was surprised with the result, at 18 she also has APS, so he has taken her under his wing. (Surprisingly he has diagnosed her on only 1 positive test - but he said she has all the symptoms and as I have Primary APS - so does she - she is just taking low dose aspirin). I'm on Dabigatran (the sister to Rivaroxaban) and have been for nearly 2 years. Suits me fine (although there's no antidote if you bleed). So you need to get yourself up to the London Lupus Centre - they are fab and worldwide experts! Good Luck from another South Eastie! x
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