Another record! – the first of October earlier this week was the hottest October day on record (as always, the record was recorded in Gravesend, Kent). “Hotter than the Sahara”.
This month was an important one for our charity. Estelle Morris (the Right Honourable Baroness of Yardley) has agreed to become the Chair of our charity. Estelle, a member of the House of Lords and MP for Birmingham Yardley, was the minister of education in the previous government.
She has become a friend and loyal supporter of our Louise Coote Lupus Unit at St Thomas’ Hospital and patron of the Hughes Syndrome Foundation for several years, and we are all absolutely delighted that she has agreed to become Chair.
Two lectures in September: one in Hong Kong and one in London. The Hong Kong meeting was high quality, organised by an old friend Chak Lau and with a keen audience – very knowledgeable about Hughes Syndrome. For me it was something of a whirlwind – out Thursday night-Friday, lecture Saturday, home Sunday. My theory is that if you come straight home, the body doesn’t have time to think about jet-lag (almost certainly wrong).
The second talk, here at the King’s Fund in London, was at the Anticoagulation Education Day organised by Anticoagulation Europe – many thanks to Michael and Eve Knight for their tremendous hard work. The audience consisted mainly of nurses and clinicians working in anticoagulation clinics.
Hughes Syndrome patients often require a high INR – especially those with headache or balance problems. In the past, this has often led to difficulties in the anticoagulation clinic, where lower INRs – for example 2-2.5 are the norm. This year at the Anticoagulation Education Day, there was a far wider acceptance of the need for better control in Hughes Syndrome patients, but also of the value of self-testing INR kits and their use in parallel with the anticoagulation clinic’s control.
Case of the Month
This patient, a 41 year old Guyanese lady, came up to me after the London meeting. She had had a long history of lupus, treated variously with Plaquenil and steroids over the years, and without severe kidney damage. Two years previously, she developed increasingly severe headaches, marked fatigue and widespread aches and pains. She then developed a DVT in the leg and was started on warfarin.
Before the warfarin treatment, her pains had never really totally left her. Since the start of warfarin therapy, almost all her symptoms have abated.
What is this patient teaching us?
Yes, she was (belatedly) found to have antiphospholipid antibodies (aPL). And her history suggests that in those 1 in 5 lupus patients who are aPL positive, a significant constellation of clinical features may be more down to circulation problems (‘sticky blood’) than to the inflammation of lupus. An important lesson.
it was very interesting to read the blog. I have suffered from Lupus and APS for many years along with all its other problems. Up until having my spleen taken out in March of this year, I was okay, managed well with headaches etc. I had taken aspirin for a good number of years but before having the op I was told to leave it off until out of hospital. I had my spleen taken out, put on low dose heparin whilst in hospital and for the following three months (no other anticoagulation drugs) and then in April, whilst shopping on a Saturday with hubby my eye sight went and I went to the Eye Infirmary and said it was to do with the APS. They contacted Haem at the hospital (on a Saturday) and I was told to take Clopidgrel as well as low dose heparin. I did say to my Haem team that because of my mum had passed away due to bleeding from Warfarin (she had a stroke) but it was talking to deaf ears. I was referred for MRI which showed lupus lesions etc and told had TIA and then a good few weeks later put on Warfarin - and since my INRs have been all over the place. I did not realise until looking at the website that if your INRs are low you can experience side effects - and they were the ones I am still experiencing - pins needles, numbness in leg around body, burning sensation on face and feeling really wierd.
I was not given any information concerning side effects and INRs, therefore, it would be brilliant if this info was given out.
I am being referred to London as I am told I am a complicated case!!! Why is it that I was taking Aspirin - no wierd side effects and as soon as on Warfarin, these funny turns. I cannot wait to get to London to sort out.
I was diagnosed in London by Prof Cranston and Dr Hughes in approx 1980s then moved to South West and that is when I feel that the guidance on this condition is not to what I expect.
My experience was not good on Warfarin so now on Heparin. Before i started Warfarin I experienced loss of eye sight and put on low dose of Aspirin. Felt no different but consultant said i needed to be on Warfarin.Started Warfarin and felt really weird,drunk,light headed, spaced out you name it ! Every time I went to local Hospital to be checked told them i did not feel right. My INR was to be 3-4 sometimes it was 2 sometimes 7.7 !!! Stopped the Warfarin and it was suggested i went on Heparin as Warfarin was too dangerous for me. I have never felt well since starting the Warfarin and i still feel ill whilst taking Heparin. Never felt so mixed up and unhealthy to be honest. I am waiting for the day for me to feel wonderful as the saying is ' Once the patient is properly Co-agulated they can lead a normal life !!!' Hope one day there will be a wonder drug that will help some of us out with the miserable pain and symptoms we have to put up with !!!!
As usual an interesting an informative Blog. Please don't stop!
Obviously no one from Kingston Hospital Anticoagulation Clinic attended the Education Day as they refuse point blank to allow me to self test and work with them. They say with Hughes you need a venus blood sample to be accurate. Shame.
But then their nine page information sheets on APS given out to all APS patients states that APS should NOT be tested routinely in pregnancy or that anyone who has a thrombotic event should also NOT be tested for APS.
under References it states:
Cohen D, Berger SP, Steup-Beekman GM, et al; Diagnosis and management of the antiphospholipid syndrome. BMJ 2010 May
Clinical Guidelines for testing for heritable thrombophilia, British Committee for Standards in Haematology (January 2010)
Belilos E et al; Antiphospholipid syndrome, eMedicine, Aug 2009
Guidelines for the investigations and management of antiphospholipid syndrome, British Committee of Standards in Haematology (2000)
Reducing the Risk of Thrombosis and Embolism during Pregnancy and the Puerperium, Royal College of Obstetricians and Gynaecologists (Nov 2009)
Just wondering why the name Hughes of Khamashta does not appear anywhere???
Their names do not appear simply because they were not involved in the research The pivotal BMJ article was carried out by the excellent Dutch team, Hannah Cohen and Lesley Regan do collaborate with Munther Khamashta on the Obs and Gynae guidelines, along with the brilliant Beverley Hunt and Catherine Nelson-Piercy. The HSF works with all these specialists, particularly with those from UCL, as we are now a national charity and not one that is solely linked to St Thomas'.
Our charity is campaigning to change the inclusion of aPL testing at all stages of thrombosis and pregnancy. We aim to be the patient advocates and steer away from diagnosis criteria which really only applies to research studies.
The charity’s mission is to save lives and improve others by achieving earlier diagnosis; therefore we are campaigning for:
• automatic antiphospholipid antibodies (aPL) testing after one early miscarriage if the patient has related symptoms and/or lupus – after two miscarriages otherwise
• automatic aPL testing after any late (after 12 weeks) pregnancy loss
• aPL included in thrombophilia screens in all hospitals – our research has found this is not the case throughout the UK
• aPL testing to be carried out on young (under 50) unexplained heart attack, DVT and stroke patients
It is a shame that Kingston PCT won't allow you to self test. There is no national policy and the decision is made by the PCT alone. East Sussex, for example, is very pro self-testing while Croydon takes the same approach as Kingston. We were trying to address this then the break up of the PCTs was announced - what exactly will happen when the consortia take over is anybody's guess. It will be down to your own GP and/or consortium so watch this space ...
Thank you for this blog excellent timing for me! interestingly my inr target was increased from 2.5 to must be above 3 after recent hospital admission for pain behind my left eye & nausea severe at first but residual pain with occasional light headed symptoms, poor concentration lasting 4 weeks with long standing fatigue issues but all symptoms including fatigue - yippee! miraculously disappeared on attaining an inr above 3! My ACL antibodies are 83 & 23 m&g currently. Like the previous comment i have been advised by my rheumatologist only to have venous sampling.
At the inr cllinic although my target is minimum 3 the computer excepts ranges below 3 eg 2.5 so warfarin is dosed to attain this. Before knowing my latest inr i knew it had slipped below 3 as fatigue and pain behind left eye returned yet it was only 2.8 but made such a difference to how i felt when previous week it was 3.5 & i felt "normal" roll on inr's above 3 i say kath xx
It was interesting to read that Hughes Syndrome patients often require a high INR compared with the norm which can be between 2-2.5. I have had APS for 11 years since a DVT and had 6 TIAs and a stroke in 2010. I am flying to USA tomorrow and have increased my warfarin on doctors advice to get my INR from 2 up to 2.5 for flight. But listening to this maybe I should increase it more to get it beyond 3? If anyone can assist then I would be most grateful.
When I asked about self testing as Professor Hughes, quite rightly from the way I feel, thinks my INR range of 2.0 -3.0 is too low for me causing me daily headaches and extreme fatigue 'someone' at my anticoagulation clinic said - to quote "If Professor Hughes is such an expert let him take over your dosing and warfarin management!"
I was very angry and upset at first but when I had calmed down I saw the funny side of it - I had to or it would've made me ill as I take critisism of people who are genuinely brilliant and have been helpful and supportive to heart. I now go along for my regular blood tests to check my INR, try to keep it as near to the upper end of the scale (3.0) as I can, have as little to do with my anticoag clinic as I possibly can and any problems I've contacted London Bridge Hospital where all the secretaries are very kind, helpful, supportive, they listen to your problems, enquiries etc and if Prof Hughes is busy or unavailable then they will ask one of his team and will always have the courtesy of getting back to you with an answer, even if it's advising you to see your GP.
Speaking from experience, I have never been left waiting for an answer or had any caustic comments from them (referring to first paragraph!)
I think we need to clone Prof Hughes!, as i despair of majority of Drs have seen regarding my APS, he was the only one to prescribe treatment, ( ie Warferin and plaquenil) that have given me back a life, after spending years going from from one so called specialist to anouthe, and being treated like i was neurotic, thousends of pounds wasted in the national health merrygo round, one visit to prof Hughes, and I get the right treatment, and treated by his wonderful staff like a human being.
I have no complaints about my local Anticoagulant clinic at Lewisham Hospital, ( they are great), but I would never have been started on the right treatment, if it hadnt been for Prof Hughes, so I agree with everthing you say, kind regards
Hi. I went to my rheum. on friday. My INR had been a 1.0 He was not concerned because i have both APS and von willebrands ( i have bleeding problems and clotting problems). I am only on a baby aspirin. has anyone ever heard of someone having two opposite conditions in the same body? I am astroke survivor, but i am always tired and get those "drunk" feelings. Thanx for any info.
Kate - Thanks for that info its great to know you are fighting our corner.
Kate and all, This is ver informative and gives me a better understanding of the issues facing patients in the UK. Here in the USA our insurance is more complicated and not everyone has coverage. Many people without good coverage don't have access to to healthcare unless there is a catastrophic event or an emergency, at which time symptoms are treated and not searching for an underlying cause.
Wow - this is a revelation! Nearly 6 years ago I had a lupus flare and adrenal haemorrage (still no one knows if these are linked) so rheumy & haemy decided to lower my INR range from 3-4 (3.5) down to 2-3 (2.5). Ever since I have felt atrocious - increased fatigue, night pain, forgetfulness and general 'brain fug'. Despite raising these issues at all 3 clinics (Rheumy, Haemy & Endocrine) they all insist that there's no reason and I should just make lifestyle adjustments, or preferably stop droning on about it......How can I speak to an APS specialist to see if INR increase is possible? Any ideas?
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The pivotal BMJ article was carried out by the excellent Dutch team, Hannah Cohen and Lesley Regan do collaborate with Munther Khamashta on the Obs and Gynae guidelines, along with the brilliant Beverley Hunt and Catherine Nelson-Piercy. The HSF works with all these specialists, particularly with those from UCL, as we are now a national charity and not one that is solely linked to St Thomas'. 
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