Sticky Blood-Hughes Syndrome Support

Feeling cross!!!!

Hello all,

I have just spoken to my consultant via telephone appointment and feel incredibly frustrated and p*ssed off.

Just a quick recap on my history - I had my son no problems but after delivery I had an infection and generally a really rough time of it. During this time, I also delevloped what I now know to be very prominent livido 80% of the time and raynauds. On trying for a second child we had two miscarriages and I seriously could not cope with the thought of a third and begged my gp for some tests. Very long story short I test positive for LA and got referred to guys.

As I do not meet criteria of three or more early miscarriages or a pervious blood clot and have a blood factor deficiency it makes diagnosis difficult.

However there is ‘new’ test called an ASLA which takes into account the factor deficiency and have now tested positive for this test twice but they still won’t diagnose me!!!! AS I DONT MEET CRITERIA

What on earth was the point in all the tests if they still won’t diagnose. They want to say that I have the antibodies but not the syndrome, which to me makes no bloody sense at all.

Furthermore (in the consultants opinion) if my circulation was not so poor I would not even require aspirin and would be on no treatment whatsoever!

I know in the grand scheme of things I am extremely lucky to have this so mildly and others have suffered much more then I, but what does it take for them to say YES you have this and we need to keep an eye on you.

Admin team - please use your contacts to have this criteria non sense changed!

Rant over.

70 Replies
oldestnewest

So many of us here can so perfectly relate. I’m so sorry.

I passed the lab criteria twice with positive bloods, but just barely. “ mildly positive.”

The clotting criteria component would have been easily passed in the origional saporro criteria from 1999 I believe, but not the rather restricted, or refined Sidney revised criteria from 2006. There in lies the problem. ( part of the International Congress conference in Sidney was great- very good Work was done during this conference. Just this revised criteria got dangerously restricted. )

Two weeks later I had a massive DVT and “ congratulations! Now you’ve passed the clotting criteria!”

I knew, like you, the criteria system was wrong. Terribly wrong... it makes no sense.

A new revision must be implemented.

By the way, APSnot fab has just in the last few days posted a few papers on just this subject for us.

3 likes
Reply

Hi, I totally understand and emphasise your reason to 'rant' - so many of us go through frustrations with Doctor's, even after we are diagnosed.

I hate this new system of telephony appointments, they don't understand our need to talk things through in person, we build up our hopes that we will be supported, let alone helped!! (My rant over)!

Are you experiences any symptoms at the moment?

I agree with you, you have tested positive to APS and now positive to their new test. You do have choices, you can put your sentiments in a letter back to your consultant, explaining you feel vulnerable and do not wish to wait for a clot! You can ask for a trial of heparin or warfarin to see if your symptoms improve?

If you have no symptoms then keep taking the aspirin and note everything down. Talk to your GP, hopefully to get good support.

1 like
Reply

Please do not worry about having a rant, we have all been there and understand perfectly the situation you are in.

First of all who is it that is making these decisions> Is it the Consultant, a registrar? Who exactly has told you these things and won't actually make a decision about your care?

Second, you should know that a lot of Hospitals, Guys included are removing the facility where your appointment is with the consultant you are under. You end up seeing whoever is free on the day - normally a handful of Doctors ranging from Juniors to registrars, working with the consultant and providing they don't have any cause of concern they do the appointment and make the decisions. Only if something concerns them do they ask for the consultants opinion, which does not even necessarily mean that they will come and see you but just relay the advice back to the same Doctor to tell you.

I have had my appointment at Guys changed 4 times since August for next Augusts appointment already. I noticed that the consultants name has gone from the letter and been replaced with "The Lupus Consultant". When I enquired about this I was told the above. So those now being referred under a specialist name won't be guaranteed to actually get to see them.

Do as Hollyheski suggests, write to the CONSULTANT and tell them how upset and vulnerable you feel and that you want them to actually make a decision because its affecting all parts of your medical journey.

If you don't get a response, complain to PALS and kick up a stink. Everything that is going on is due to shortage of funds and therefore shortage of Doctors so clinics are being cancelled and very over crowded.

In the meantime stick with your aspirin and let your GP know how this is affecting you too.

We are hear for your rants and we will give an ear and sympathy, not sure we can do a lot more at the moment. Big Hug! x

5 likes
Reply

I am really shocked to read that many hospitals are now operating a system whereby a patient sees whoever is available on the day. Not in terms of registrars, but JUNIOR DOCTORS???? I am in Scotland and, thank god, have never heard of this occuring. Truly, I am sitting here with my mouth open.

1 like
Reply

Honestly some are completely clueless!

Reply

Registrars are junior doctors - everyone below consultant is a junior doctor !

1 like
Reply

Yes, I was forgetting that. I was referring to someone attending a specialist clinic and being seen by an FY1 or FY2.

Reply

In one of my conversations with Dr Graham RV Hughes, he told me that in his view,any woman who has A (ie 1 - not 3, 5 or make up a number) miscarriage should be investigated for APS/Hughes.

A close friend of mine's daughter, had 2 children without problems, however,she then experienced several miscarriages. No doctor offered her even the most basic blood test.

I am not a doctor, but spoke to my friend and her husband and mentioned APS/Hughes and perhaps she might find someone who was willing to listen to her. She eventually did, was given LMWH and had a successful pregnancy.

APsnotFab has good advice. You must fight for yourself because the situation at St Thomas'/Guys is no longer the place when Dr Hughes was in charge. If you have a good GP, get them involved.

You need support and that's why we are here for you.

With good wishes,

Ros

4 likes
Reply

Hi all,

Thank you for your kind words - I knew you would be the people who would truly understand how I am feeling - and your outrage is greatly appreciated!

Kelly what you experienced is my exact fear! I thought being mildly positive would mean less chance of a clot. Is that not the case?

Other then my miscarriages, livido and raynauds I have another issue but I’m not 100% if it is APS related. Your thoughts are welcome: I get numbness and heavy aching limbs - particularly my left arm (I went through a phase where I would wake up at night with two ‘dead’ arms) A circulation issue as the consultant thinks or APS related?

APsnotFAB it was actually the consultant who has made this decision. I know exactly the system you are talking about at guys - talk to someone useless and spend more then half of your appointment waiting for them to come back from speaking with the consultant. However since I had my first positive at guys I always see the consultant in the pregnancy clinic who apparently specialises in APS. She is knowledgeable about APS, but she seems hell bent on disproving my lab results and was saying she was going to refer my results to some other more senior Dr even though the lab has confirmed them as positive. How do I go about changing consultant? Is there a point? I would really love to see Beverly Hunt but I don’t suppose that there is much hope of that.

I have already made an appointment to discuss this with my ‘Dr’ who is absolutely amazing - she actually listens and hears what you have to say.

Thanks again for all your support this forum is a God send!!

1 like
Reply

Hey

I know exactly how you feel.

Thankfully I finally got diagnosed but unfortunately I’m like Kelly - I had mild positive results and even negative ones but still has some pretty major issues with TIAs and spinal cord stroke.

It doesn’t matter how high / low your results are and with lupus anticoagulant it’s just positive/negative regardless of the number it comes back with.

Good luck x

2 likes
Reply

Thanks for your response. Hope your keeping well x

Reply

I agree with the advice you have been given so far, I myself would and have in the past written to consultants and just refused to take a half diagnosis off anybody. My children and myself were put at risk partly as I was sero negative for along time, and also at the beginning so were my children, my daughter went on to have Lupus in addition to Hughes Syndrome/APS, my son Hughes Syndrome/APS and my other son, 'tinged' with Hughes Syndrome/APS and Hashimotos, albeit, currently mildly.

I never had a miscarriage, as a) I put myself in hospital with my first child, as I was convinced, that like my sisters, I had blood clots in my legs, (I did, several of them), I was in hospital for literally weeks and weeks, due to that with each pregnancy the Fragmin was started early. If not I would have probably become another unfortunate statistic.

When I first went to hospital, pregnant and 24 years of age, concerned about niggling pains, and with my family history written out, I was told by a well meaning and kindly old consultant to 'run along dear', when admitted a few days later with clots in my legs, he appeared to have never ever met me before!!!

Naturally later on in life Prof Hughes joined all the dots for my family.

Mary F

3 likes
Reply

Thank you Mary, I won’t be letting this consultant get away with half measures- especially when the evidence is so clear.

You raise another point, my daughter Isabelle is 20 weeks old and also has prominent livido, not all the time but when it arrives it is very clear. My son has never displayed any signs of livido. I showed Isabelle’s livido to the consultant who didn’t think much of it and just said aps isn’t hereditary, but obviously I am concerned about it. Thoughts?

Reply

Babies can have mottled looking skin for different reasons it's quite common I remember having a panic and texting pictures to my friend who's a gp! My son now 5 yrs has never shown any issues since being a baby.

I hope all is well with ur new addition! And u are getting some sleep!

1 like
Reply

Just seen your response, glad I’m not the only paranoid mother out there!

Sleep?? What’s that I’ve forgotten.

1 like
Reply

Oliver’s mom,

Mildly positive has proven to not mean a thing in my particular case, and I find it very surprising and concerning. Additionally I test positive for one of the phospho tidyl serines . ( spelling?) . My 16 year old son two tests for two of them. Professor Hughes writes in his boook Highways and Byways that he could just have well used those when initially testing for anti phospho Lipid antibodies, but had the others “ on the shelf “ in his lab. They are all in the the family of pro thrombotic antibodies and I don’t really think anyone knows quite for certain if any are more pro thrombotic that others. Many doctors do think so, but it may have to do with “ combination” factors, and timing of tests stacked against these combinations.

I had many miscarriages along the way- often not in series. One ectopic that nearly cost me my life.

I was “ undiagnosed” by a top USA specialist only 8 weeks after my DVT because I went sero negative.

(I was sent to him not to confirm my already established diagnosis, but to try to ascertain why my INR kept dropping despite increasing the amount of warfarin.)

Fortunately my rheum and GP knew better, prescribed my warfarin, and got me to London Lupus Centre where Professor Hughes co consulted in on my case with Professor Natasha Jordan.

Together they not only confirmed my case, but raised my INR. It was previously set between 2.5-3.0, and Professor Hughes raised it to close to 4.0.

I had never before been prescribed heparin for subtheraputic dips, so Professor Hughes prescribed Fragmin for such episodes.

He also suggested a Home checker for better daily control.

This clinic letter did help me establish a a point to begin with a new hematologist when I arrived back in Texas. ( I had to start with a new one .)

1 like
Reply

Have you informed this “Aps” specialist about this blood test you are now positive for, phospho???... and did he have any back pedaling to do?

Just curious if he can admit he was wrong? Or if he even knew about this blood test, Cindy

Reply

It’s was the the consultant ‘aps specialist’ that ordered the test. I think she was banking on it coming back negative and washing her hands of me, as I’ve not had a clot I’m just not that interesting???

Reply

Interestingly he told me The phosphotydel serine Antibody tests were super spiffy... only he had the test... la dee da... kind of thing.

Turns out I had only the previous week seen a Rheum in Texas my GP had sent me to who had run the same test, only he had called it the ,” extended lupus panel” . The results were positive at that time, only I did not yet have the results back! So in onewerks time those little suckers went sero pos/ sero neg as well.

The point is ... ahem ... Dr Erkan- ( those who are reading please catch the name ) New York Top specialist- world renown APS specialist - is not the only one with accesss to this test the way he made it sound. Yes, not all doctors run it- I agree. Most don’t.

I’ve thought of calling nicely calling. I’d like to affect positive change - but it does not change his view points on high and persistent Antibody numbers.

More importantly was his aggressive take against professor Hughes. We had his book, Highways and Byways. He openly and unabashedly told us how wrong the loose diagnostic criteria Dr Hughes used was, and the importance of the revised Sidney criteria. ( which as it turns out he and his elder colleagues helped Bring about.)

He started “ mansplain’in “ it all to my daughter and me. My daughter is a brilliant PhD published Scientist at Princeton. When my brain used to work- I taught and am a linguist. My daughter politely explained she understood scientific papers when he started shoving his publications at her. We already had them. He told us nothing we did not already know- except his threshold for antibodies.

Unbeknownst to us- we stepped squarely in a hot political mess- all to do with what I believe is the revision criteria. And much much more. Little did he know I would get on a plane and go directly to the source, which is pure. It’s true. It’s not beguiled. The healing end is not. It speaks to the body- the body’s recovery does not lie. And therein lies the truth.

And there it is.

Reply

Yeee es Mam! Good girl I always said he was an a$$.” Unprovoked”... remember that? Wish I had a stick we could poke the bear, lol, love ya, Cindy

Reply

I was SN-APS for all my tests for quite awhile, however I was still diagnosed by Prof Hughes, then the following year by Prof Fortune at the Royal London who did a whole lot of tests and then by Munther Khamashta and Prof D'Cruz. All with just clinical history and symptoms.

Then one extremely high B2GP1 followed by a weak positive anticardiolipin. Last year a positive LA. I had two reasonably normal pregnancies with what I can now see had small APS complications and either side 3 miscarriages. Hughes was not even on the horizon then so I was told by a Consultant, after one early pregnancy ended with the death of the fetus in the womb, to go away and wait for it to pass naturally! The point is we are all different, APS affects us differently and no one really knows for sure just how seronegative and low positive antibodies affect the outcome of the disease. They have always said that the risk is higher for clots with high antibodies, but then newer studies are now showing an increased incidence of clotting in people whose antibodies turn negative.

It is a difficult journey for those that don't "fit" the criteria, however there are Doctors who are willing to listen, diagnose and treat but I suspect you may have to try the private sector to get that - as unfair as that is.

With regards to your daughter, we know this disease runs in families, just because they have not found the genetic link does not mean there is not one! It may be that the genes don't produce APS in generations but they do seem to produce some sort of autoimmune disease which is within a group of diseases, so you often see that. I asked Prof Hughes what age was the youngest patient he has diagnosed and he said 2 years old. My grandson was diagnosed with rolandic epilepsy and is now thought to also have EDS, he is 9. On the other side of the family is celiac disease so the genes have mixed things up with a true connective tissue mix for him.

If you are worried get her tested, you can do it privately if you don't want to go via your Dr. Peace of mind is everything.

3 likes
Reply

Oh goodness...

To continue this conversation, , I went sero positive again in short order just as professor predicted I would. ( again, mildly positive, but high enough to meet diagnostic criteria. )

I also have had one positive ANA.

I’m not sure if I had livedo as an infant, but I developed severe, life threatening ITP at 18 months of age. I was not expected to live. This was diagnostic criteria in the. Origional 1999 criteria, But was removed in the 2006 Sidney revision...

1 like
Reply

The more you tell me the more shocked I am by Drs responses. I see why you travelled overseas to see Dr Hughes.

1 like
Reply

I also empathise with the frustrating situation you find yourself in. In 2014 I was pregnant with my first child, when suddenly at 30 weeks I had a placental abruption and sadly or daughter was stillborn. Whilst still in hospital a few days later, I had multiple bilateral PEs. Bloods were taken immediately which came back borderline for LA but the others were negative. They didn't want to diagnose me based on a borderline result, and told me I'd have to come off the warfarin in order to wait 12 weeks and be retested if I wanted to, which I blankly refused. I took myself off to see Prof Khamashta at the London Lupus Centre who was able to do a Taipan Snake Venom Time Test in order to give me that second positive result for LA, without putting me at risk of further clots.

I now have a very good obstetric team at my hospital who understand APS and with their help and clexane and low dose aspirin, am now nearly 28 weeks pregnant again. I just don't think I'd be here if I'd taken the hospital's advice the first time round. If my LA levels were only borderline just as I'd delivered a stillborn daughter and had multiple blood clots, I think it's reasonable to assume they would have been negative 12 weeks later and I'd not have been given the correct diagnosis.

I now usually take lifelong rivaroxaban, which of course I've switched to clexane throughout this pregnancy.

Definitely trust your instincts and don't give up!!!

1 like
Reply

Thank you for your reply. It is absolutely shocking that Drs couldnt use common sense for your diagnosis; and completely ridiculous to suggest to stop treatment when you have just undergone such a traumatic time; losing your daughter and having the PEs in order to fit their requirements for testing.

A massive congratulations to you and your family on your current pregnancy. I am a firm believer in instincts - I wouldn’t be looking at my daughter now if it wasn’t for those!

Biggest hug 🤗 and look forward to seeing a picture of your new arrival! Xx

3 likes
Reply

Thank you for such a lovely reply! I just checked your profile and remember seeing your post a few months ago with your beautiful baby daughter - huge congratulations!!! It's so reassuring to know that the right treatment really can work. It's a nerve racking time as you must know!!! Thanks again and I really hope you manage to get the help and support you need! X

1 like
Reply

Oliversmum,

First of all, hello....People here is wonderful and the advice they gave to you is perfect; if I were you I'd follow it to T.

I really understand where you are now, as my case is just the opposite: I meet the clinical criteria (had severe, early onset HELLP/IUGR/acute kidney failure/ stillbirth. The IUGR was in fact a very early and severe onset case and docs agreed to diagnose placental insufficiency. Clexane and low dose aspirin led me to have a beautiful daughter!) But all my blood work is just normal... All of it. And there is no explanation at all of why this happened to me. They just put me on Clexane-aspirin when I'm pregnant (but they say I don't have any immune/clotting disorder as my tests are normal).

But your tale is different: you tested positive for LA... And had livedo/Raynaud's/2 MC. So, as people in Spain say: " white, and in a bottle... milk" (APS in this case). You got the nonsense consultant who thinks women with 2 miscarriages need to get another one in order to prove anything. That makes me so angry😡.... You don't deserve to go through a third MC (or a clot) just to fit in the diagnostic criteria. It perfectly can be called torture. (I am lucky at the end... But that was because docs were so neglecting that they didn't wanted me to sue them... So they put me on Clexane on my second pregnancy despite having normal blood work... while being on aspirin only I got a placental hematoma anyway!!! 😒)

You can always go to your GP and ask for keeping the aspirin. I highly suggest to take it if you want to get pregnant again. Meanwhile, keep fighting until you get diagnosed. That's the only thing we can do for ourselves. System is going to get worse: it's in our hands to get the best for us and the others.

Wish you the best luck!!! 😘

1 like
Reply

Thank you so much for sharing. Your right about so many things, this forum is a god send; especially in times as you rightly put it of torture.

I had to fight tooth and nail to be taken remotely seriously when this all began, maybe I was foolish to think that the bloods and circumstances would have been enough for a diagnosis, but I will continue to fight for what is right.

1 like
Reply

What is IUGR?, thanks, Cindy

Reply

IUGR is the acronym used for "intrauterine growth restriction"... It is when your baby is not growing enough inside the womb. For example, my first daughter was the size of a 20 week baby when I got preeclampsia... I was almost 25 weeks pregnant. She was 4 full weeks behind.... So no chance to survive.

IUGR can be caused by genetic issues (Down's , dwarfism...) or when the placenta is not working properly in order to feed the baby (placental insufficiency... one clinical criteria for APS is having placental insufficiency which leds to preeclampsia/ HELLP/ placental abruption before 34 weeks... Mine started at 18 weeks, if not earlier).

Placental insufficiency implies clots/ infarctions inside the placenta. Mine had multiple infarctions in both sides.(maternal and fetal)

I had a work colleague who studied forensics and he kindly explained to me the post mortem report of my daughter. That's how I know all of this. He was the first one who talked to me about APS. He said that the PM report was a textbook case of APS/ immune issue.

If you need to know that does the acronyms mean, just ask... I'll tell you as far as I know.

😘

Reply

Thank you, Cindy

Reply

Oliversmum,

😧 I agree totally that you should be/should have been officially diagnosed with APLS. But a bit of info to keep in your back pocket so to speak when talking with doctors: doctors are taught — or should I say STRESSED! — to fear blood thinners. At some point in their training they are shown, or taught, to note how quickly and how sometimes hopelessly they watch someone on thinners bleed out. So doctors fear putting patients on thinners and cling to that stupid Sydney criteria.

But also remember that nearly all of these “bleed outs” are from people who take thinners because they have a sticky SPOT in their circulatory system — like an a fib, a stent,etc. We, on the other hand, have STICKY CIRCULATORY SYSTEMS! And in all my years on this site I have never, ever heard of any Hughes patient having a major bleed while on warfarin. (It may have happened, but I’ve never read one here.)

So doctors who try their best to shy away from a diagnosis and treatment of Hughes do have patient’s interest at heart. They’re just confused. Very confused.

Language is everything! And framing a topic is everything! Doctors are approaching this topic from that “bleed out” frame they learned in med school. Try steering the conversation in another direcction. Present the doc with the frame you see and live with. I practised a speech on my dog in an empty house first) pointing out, as unemotionally as you can, the above info — that we have sticky blood and not just a sticky spot in our system — and that even though our blood might seem in a test tube to be very, very thin that once inside our bodies, surrounded by our immune system, our “thin” blood actually behaves normally. And if our sticky blood is not thinned with medications, then the slightest provocation to the immune system, such as walking past someone in the grocery who just sneezed, can cause our only -in-a-test-tube thinned blood to turn to gelatin!

“And so, Dr. So-and-so, would you like to walk around with the thought that your blood could jell up anywhere in your body at any time of the day? Would you like to live with the fear of ‘Oh my! I have suddenly gotten wheezy in my lungs. Is it pollen season? too cold? or is my PE coming back? ‘ or ‘Another head ache? Is it just a head ache, or another stroke?’ I try to be a responsible person. I don’t want to trouble the doctor with a silly visit just for this head ache, or this sudden cough, or that pain in my leg — but is it responsible for me to ignore what might be a serious clot? and is it responsible for you to ignore the ramifications of not treating my blood before it clots in some major system. So, if you are not going to thin my blood, please write out exactly how far any “minor” pain felt in my entire body should go before I seek treatment? Clot in my kidney? My liver? My shoulder? All these happen with sticky blood. Might I ring you up at home whenever I have a random pain so you can steer me in the right direction: serious or not?”

2 likes
Reply

Excellent. I have a very similar conversation with my docs.

Reply

I love love love your ‘conversation’ with the Dr (and an excellent point on their reluctance to offer thinners) which in truth is something that we all think, wonder and fear when those aches and pains come about. You have articulated this beautifully.

Reply

Hi Oliversmum,

Do you mind my asking who the specialist is that you're seeing, as I've had a very similar experience and I wonder if we are under the same hospital, mine is in London too.

Despite a history of multiple pulmonary embolisms, multiple DVTs, multiple TIAs and CVAs (cerebral vascular events) and I believe one miscarriage as well (although it wasn't fully recognised by the doctors at the time because I'd only done a home pregnancy test to confirm that I was pregnant).

I had two mildly raised APTT last year but the specialist I saw wouldn't even acknowledge these results and like you I was dismissed without the doctors even looking at my medical history and brain MRI results etc, which I had with me. It was so soul destroying.

So sorry for what you're going through, Claire 😟

Reply

Claire, all I can say about your story is it quite literally , very nearly “ pierced the heart.”

Soul destroying, absolutely. But literally, “ almost heartbreaking” in the actual medical sense of the word, as well as metaphoric.

As I said to the US A ,” specialist”when I was “ undiagnosed” with APS, :

“ this is wonderful news! “

I was literally the happiest woman in the world! I had only been diagnosed for about 7 weeks I think, two of which were in hospital, and I was not improving. I was still in migraine, getting superficial clots, ( not being scanned for because I was on warfarin, I couldn’t possibly be clotting...) bruising in limbs, still going into ileus, etc.

when I asked him about my previous history, my mother’s history, my elevated Connective tissue disease markers, he said he would wait a week for my blood work to come back, but not to worry. As a Rheumatologist something was going on, and he would get to the bottom of what ever the differential diagnosis was.

I was very happy. No one wants APS, but I needed resolution to my illness and a way to end the symptoms. A top specialist was going to help me do that! Without a terrible diagnosis of APS. I felt very relieved.

A week passed and I got the call. He told me. “ Just as I thought! Your blood work is negative for APS antibodies. In order to have APS , your antibodies must be persistent and high. Mine had fluctuating in the 20’s - just enough to flag positive.

*he said the threshold was 40’s minimum but really 70’s to “ get his attention.”

I asked about my history- family history... I asked him what differential diagnosis was- as he had said he would give. He had none! He did say I’m recommending to your hematologist to go off warfarin immediately. Then you need to be checked for protein c and s disorder and Leiden v and MTFKR.

My hematologist back in Texas loaded this TOP USA and world renown APS specialist’s notes in his Texas Oncology computer system. My hematologist of course dismissed me as a patient.

And there I was “ kicked to the curb.” Very sick, unsteady balance, intermittent paralytic ileus documentable by x-rays, seizures, and down to 101 pounds. I looked like death and felt even worse.

My GP and diagnosing Rheumatologist were very concerned. My daughter had found this forum for me, and that’s how I knew about less “ bookish “ criteria , although during the 12 week wait between bloods I already instinctively knew “something didn’t add up with the criteria. “ It flies in the face of the overarching principals of preventative medicine.

I did not know it was the2006 Sidney revision .

My GP took over my warfarin. My GP - ( originally from India) did his a post specialization in in internal medicine at Kings Square (?) hospital in London- and advised me see London Lupus immediately. My neurologist( originally from India) also did an advanced (?) fellowship epilepsy at one of the hospitals in London. My sons Pedi Haemo ( originally from India) also London trained..

I flew to London within two to three weeks I think. .

So I happen to have a sub set of a lot of my docs here in Texas that are actually London trained. So it does in some way help me to have Professor Hughes’ clinic letter. Not for liability purposes- but to help them create a mental framework. They are so used to the states now where the Sidney criteria is more strangling. ( or so I thought.)

1 like
Reply

It's appalling what you have been thru too Kelly, as patient's we know our bodies and we know when something is wrong, as does Oliversmum!

I can say with absolute confidence that "I have never been wrong" ( tests finally performed days, months and sometimes even years later have proved that I was right!)

It is the doctors and specialists who have been proved wrong so so many times and I can't tell you how many times during the past twenty years, I have been dismissed or belittled by doctors and specialists who, not even bothering to look at my medical history or past test results, tell me they know what's wrong with me, or rather what isn't wrong!

I am still shocked by the arrogance I am faced with from doctors and specialists alike, when it comes to making life and death decisions concerning my on going health care, treatment and medication choices and Oliversmum is yet another victim!!!

I will join Oliversmum in her "rant" because it's just not good enough..........It's shocking and soul destroying and isn't it about time that someone stops this from happening to us???!!!

How many more babies must die, or strokes must we sticky blood patients experience before the so called medical experts wake up and actually listen to their patients!! Claire😤

Reply

Hear hear! Well said Claire!

Crazy idea but I say let’s start a petition to have the aps criteria updated. It’s been more then 10 years since done last right? And clearly it’s not working for many.

Isn’t the whole point of criteria to help diagnose patients.

2 likes
Reply

That’s interesting. APsnotFab posted a paper 5 days ago ... or embedded a link about the pros and cons of sticking bookishly to Sidney revision. Where does it help, where does it hinder. Closing the serological gap were key words in the title... have a look in the past few days posts.

1 like
Reply

A petition would be a really good idea Oliversmum and I would definitely be signing it!

It frightens me how heavily the APS specialists seem to be relying solely on blood test results to diagnose APS nowadays. Plus they also seem to rely solely on blood test results when it comes to deciding whether to prescribe anticoagulation medication but then also rely solely on blood results when decide to take away anticoagulant medications from a patient who previously tested positive but then suddenly tests negative again (after often experiencing an actual blood clotting event?!).

What about seronegative patients, why are specialists no longer willing to diagnose a patient by looking at their medical history, current symptoms and family medical history etc, when Professor Hughs does this and has even written books about it?!😮

Reply

I agree with you all!

I agree with Gina that during my years on this platform (at least 6 years) for APS I have never heard of a serious bleed from Warfarin. That was due to Warfarin!

I think my Hematologist listens to me now. My heart-specialist said I should stay on an INR of 4.0.

Kerstin

2 likes
Reply

I have all 3 antibodies and sle but not had a blood clot or definate miscarriage and I'm on treatment. Used to be on aspirin for years then 1st pregnancy just continued aspirin then 2 nd I had aspirin and daily heparin injections. I'm now on clopidogrel daily. I've no history of clots but always been treated. I have livedo and migraines and poor memory.

Reply

Well... stroke and livedo and migraine are correlated . Please be very careful. You might bring this to your doctors attention. Dr Hughrs talks about this.

1 like
Reply

What do u mean?? Be careful?

Reply

I re read what you wrote. I at first thought you were ONLY on aspirin and clopidigril. With livido, migraine, and all antibodies I was very worried about stroke.

You are on warfarin currently? Sorry I misread that...

Reply

No I am only on clopidogrel now. Was originally on aspirin then during 2 nd pregnant was on daily heparin for the 9 months plus 3 months after!

So no I'm not on warfarin or clopidogrel. I have LA anticardiolipin and beta antibodies but no stroke or clot before.

Reply

Sorry meant I'm not on warfarin or heparin!!! Just clopidogrel ha!! Sorry for confusion!

Reply

That’s tricky isn’t it. I see below that Kerstin may be thinking along the same lines I am. She is an administrator and has been studying this many more years than I have been. I defer to her wisdom.

Did your headaches improve with the Heparin shots during your pregnancy? That might give you a clue as to what your body might now need.

Of course I’m not a doctor, but you have all three antibodies. You have livedo. You have memory loss. Migraines. I suspect you are just having difficulty getting proper oxygen levels to your brain.

I am concerned about stroke.

I do not recant my first statement- it’s stronger now than it was.

Kiss on the cheek. I’m sorry.

Reply

I think they may have got better. The cons did discuss trial of daily heparin inj but tried clopidogrel first. I can't come off the beta blockers as soon as I do I get migraine daily.

I've always wondered if I should be under someone else but my rheum has always treated me so I feel bad/rude asking him if I should be seeing someone else! X

I do get really severe stabbing pains in my head but I've had MRIs all ok?

Reply

This is an awful place to be. Is it possible to ask him who he “ works with “ that he “ trusts” who he’s a really good handle on APS specifically that he could partner up with? Invite him to be part of the team...

Tell him you’d like to try warfarin? You feel it’s time. Maybe he will agree and send you to hematologists. Tell him you need him as your main advocate?

Pain in head- I’m not sure.

Reply

But if I've not had a clot then I don't need warfarin??

Reply

I’m not sure. Perhaps rivaroxaban. ( look up 2016 RAPS trial results under Pinned posts here on forum.)

Now we are in very controversial and tricky water- and rightly so. See, you are having neurological symptoms. Better warfarin. But no clear evidence of a clot. Talk to Kerstin.

I’m in very different shoes. I have documented seizures. ( 1999 criteria.) many miscarriages. ( not in series.) 1999 criteria) but I do have massive repeated DVT and livedo and migraine and neuro cog decline evidenced on testings. So I fit very squarely warfarin only with INR of 4.0+

I’m not quite sure what to think of you other than you are scaring me a bit.

I’m inclined to say a trial of heparin for 6 weeks- chart your response - then decide. Why do I say this? I think this is likely what Professor Hughes would do. He has written about this protocol many times.

Reply

Sara,

We do not always have to wait for a stroke. I am not saying you should have a stroke but I am a bit worried about the drugs your Rheumatologist have tried on you.

I am not sure he is knowlegable on autoimmun illnesses. Sometimes it is better to get a new fresh eye on it who really also knows what drugs you need. You have got 2 illnesses and probably neurological symptoms and also sudden stubbing migraine.

Usually Clopidogrel can be connected to Warfarin or LMW Heparin if special symtoms requite also those drugs.

It is just a feeling I have. Perhaps I am wrong. Talk to him at least about what he thinks about your treatment. These illnesses are really tricky and need their man or woman.

Kerstin

1 like
Reply

I see him again in 3 wks so will discuss with him about a haematologist opinion x

Thanks all!

Reply

You need a Specialist who knows autoimmun illnesses! It can be a Rheumatologist or a Hematologist. I think you should try to find that Doctor yourself if he can not answer your questions so you are satisfied. Few Doctors know these illnesses. I can be wrong. You have to test him.

1 like
Reply

Yes. Since you do like him I hope he will support you and join you.

1 like
Reply

These are also my feelings. I am worried about your symptoms.

1 like
Reply

That's not quite true as I was put on warfarin immediately and have had no clot .Doctors have different opinions

Reply

I have read that you were diagnosed for RA, APS and Fibromyalgia one year ago.

Have you had any positive antibodies during this time?

I also wonder, if you after seeing your Specialist of autoimmun illnesses (which i assume you have now), still have those 3 illnesses?

How is your jerky feelings and difficulties to walk today?

Kerstin

Reply

Sorry, this was a question to Fra22-57.

Kerstin

Reply

Yes, whole heartedly agree. I’ve been in this same boat many times.

Dr Hughes explains its the experice and skill of the clinician. He says it’s the advantage in going to a clinic such as the London Lupus Centre that deals with just such cases at yours and Sara S several times a week instead of , “ you’re my very fist case” like me, or adhering to the Sidney revision for dear life like most for fear of bleeds, or ignorance of the original 1999 criteria and value and diagnostic ( safe) understanding of balance for patient.

1 like
Reply

Hi Sara,

I know you have both SLE and APS and APsnotFab spoke with you 2 or 3 months ago and I also.

What I wonder is if you at present have a really good Specialist of autoimmun illnesses as you have had both some neurolgocial symptoms with bad memory (probably TIAs) and also so much pain in your body that you need morphine. I do not know if it is only short term use. Hope so.

You have two autoimmun illnesses and are now on LMW Heparin (which should help with your sudden migraine and ev clots etc ) and also Clopidogrel and I wonder if your Specialist is the best for you at present? I just want to know that you are treated as good as possible to get rid of the pain.

Kerstin

Reply

I was only on heparin during and after pregnancy. I'm now on just clopidogrel.

The morphine I'm hoping is just until they can settle my joint and back pain with the right immunosuppressant I'm on mycophenolate 4tabs a day now and hydroxychloroquine and am coming up to the 3 months of the increased dose so fingers crossed!

I have no evidence on MRI of tia or stroke.

My specialist specialises in lupus and he always seems to know about my anticardiolipin antibodies as some levels are in 200's??

I feel my memory may have improved since starting the clopidogrel and I'm on beta blockers also for the migraines.

Reply

Those are very high ACL numbers! I do belive you need sumatriptan for migraines until you sort out proper warfarin anticoagulation therapy. Benadryl to sumatriptan will help you sleep . ( per my neurologist.)

In the mean time magnesium helps prevent in theory.

I get para cranial nerve block injections once a month ( 24 at once) of steroids in skull.

Honestly none of this helps except sumatriptan.

If my INR is high enough none of it is even necessary- the migraines are eliminated!

Reply

I have naratriptan for when I get a migraine but I take beta blockers twice daily to prevent them. So rarely need to take now as before I was taking most days!

I used to suffer really badly with occipital neuralgia and had to have occipital nerve blocks in base of my head.

Reply

I might try beta blockers then. They did discuss- but because I’m developing early and mild POTS the decisinvwas made to not use beta blockers.

Now after heading your info I may re think the beta blockers.

But- I will not hi jack poor Oliver’s mom’s post with beta blockers!

Reply

Exactly! Oliver’s mom, I hope you do not feel so alone now!

Our intellects must be honored. We instinctively know that “something is not right with the diagnostic criteria.”

It is the revision at the heart of it. As Gina says, these doctors are worried- they are not aware of the origional 1999 Sapporo convention and the diagnostic criteria.

I often tell my doctors it’s like automobile models. The newer model often has some improvements- this is true. But not all the problems have been worked out with the new model 2006) yet! The older model was better in some aspects! We just are waiting for the NEWEST revision. We need it!

2 likes
Reply

But the question is how do we push for this change? Who do we write to?

So many of us know that this is wrong so we should voice this to the people who can actually make a change.

It feels wrong to do nothing and let another generation of people go through the same as us.

Reply

I agree. The problem is the top experts do not yet agree. They are also aware of the two different criteria- the origional 1999 Saporro and the Sidney congress 2006 revision.

The aim of the GHIC international charity is to help doctors get on board- all on one place. This was doctor Graham Hughes largest and all encompassing vision.

That’s the place to start. That’s where Professor Started.

I’m doing my part in the USA with research Professors/ Physicians that are at the TOP. (One of my neurologists is a top APS well published APS specialist. ) They are published in journals that professor knows all too well. These top physicians must all lie in the same bed together at some point whether they want to or not. They have to cross cite each other’s Work- peer review- etc. it’s a very protocoled process in this research world.

It becomes a tangled mess very quickly.

That’s all I can intelligently or politely say. Research is a huge complicated machine with gears that try to serve us best, but the works can get gunked up. I’m not sure I understand what is gunking up the works exactly. My neurologist looked at me with dead cold eyes, and she refused to even consider looking into the charity ( GHIC) when I asked her to. ( she has published often with Khamashta, and thinks highly of him as far as I know.) She also told me I was naive. (?).

My Rheumatologist, However, who works with her, was much more open to it. He is going to join.

I’m advocating hard and heavy.

2 likes
Reply

AMEN!!!

Reply

You may also like...