Sticky Blood-Hughes Syndrome Support
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? Written guidelines anywhere for Hughes/APS, may be then other drs would stop trying to re-invent an already invented " Hughes tx wheel"👀

Anything published/written by Professor Hughes as specific guidelines/treatments that can be printed out and given to physicians? This could stop our own physicians from starting to recreate an already proven Hughes treatment wheel.( I ran out of spaces in title, trying to be clear!)

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I am not aware of any guidelines as such, Prof Hughes has written several medical textbooks - you can find them on amazon, but they aren't cheap.

Prof Khamashta who works with Prof Hughes (and is co-author of several textbooks with him) is also one of the authors of the international guidelines which are here:

The problem with "recreate an already proven Hughes treatment wheel" is that there simply isn't one to recreate, yet - we simply don't know enough and not enough research has been done. In the guidelines I've linked above, of the 13 treatment recommendations 7 are not even graded as reaching the lowest level of evidence, and none are graded as high quality evidence. In some areas (e.g. arterial clotting / stroke) prospective studies consistently and repeatedly disagree with retrospective, which is a massive red flag that medical science doesn't know what is going on with this disease and doesn't even know enough yet to design and execute studies to find out what is going on.

At the end of the day, if you want to be assessed and treated "as Prof Hughes would", then there is a proven method - you need to go see Prof Hughes. It simply isn't reasonable to expect another clinician to mirror his 30+yrs of experience with this disease and ask you exactly the same questions, perform exactly the same analysis and prescribe the exact same treatment - I have seen 10+ consultants/specialists all working in the same hospital trust, sometimes several in the room together at once, do they agree on my treatment? No. Find a specialist that you trust based on their experience (and you can and should ask them about it) and go with what they say, or go see Prof Hughes (I'd say go see his team/clinic, but there are plenty of posts suggesting you'll get a different answer from some of them too).


First of all try to read as much as you can about his illness. I have several books written by prof Hughes. Yes they are unfortunately very expensive in Sweden but they were important to have so ....

I think the Doctors learn from us. It is a trial and error and we are all different even if we have the same illness. This illness was found in 1983 and as it is a rare syndrome very few Doctors take notice of it.

Prof Graham Hughes is a Doctor who knows a lot of this illness. I listen to him and also tries to understand my own "events" and how I react.

Try to eat well and exercise as much as you can. You can learn a lot from this site, take a copy and take to your Doctors. Just to be on our site is knowledge. Hope you agree.

I am not sure I understand what you mean with your question and "already invented Hughes tx weel!"



Just to be safe....

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The above comment popped up on my screen and would not allow me to move on until I posted it... so I did, APsnotFab do you know anything about this?


All I know is if you go into a doctor with chest pain...there are guidelines to follow: they listen to what the patients symptoms are, and based on what they are told they have different guidelines of which they can chose. Example: chest X-ray, EKG(electrocardiogram), or rest and ibuprophen/Motrin. Depending on what is seen on the ekg , different avenues may then be taken certain things for atrial fib versus different things for a myocardial infarction, etc. Example for Hughes or TIAs could be: labwk for APS, baby aspirin, if not allergic, until results of labs are known. Once labs are known to be positive for Hughes/APS begin warfarin, if not allergic, to maintain an INR of 3.5. This would stop this nonsense of INR between 2-3 for APS, because we would clot before we bled out. I already have books but I'm speaking of "professional guidelines" for physicians... it has to begin somewhere. It usually has to be approved by ""the college of chest physicians" and then moves on from there ( I think). It would save many from being "mis"- diagnosed and "mis"-treated. Just a thought.


Exactly the sort of guidelines you are looking for are referenced in the link I posted earlier - unfortunately the pubmed full text link is a lie and doesn't link to full text (unless you pay). Full text is available on the net - link below, but it is a long url - may not work in a post (can't preview on this site to check)

You are looking for Table 6, a few pages in, for the recommendations.

What isn't clear, per your original question, is how much input Prof Hughes had into it.

Per your suggestions, just some of the issues:

"labwk for APS": which labs, how many tests, how far apart, what if the antibodies come and go, what about seronegative (which is probably seropositive for antibodies we haven't found yet - see e.g. There is no consensus on this, Prof Hughes approach will differ from others.

"warfarin, ... INR of 3.5": no consensus on this either, there are studies that show a better outcome for 2-3 INR range, the studies are prospective and have been repeated with same result - but they contradict other retrospective studies. In short, we don't know the best range for an arterial clotter, period. Note that I _am_ an arterial clotter (stroke/TIA), and I _am_ on 2-3, after a lot of my own research.

"we would clot before we bled out": not so, the pathology of the disease does weird things to blood vessels so we clot _in_ the vessels but bleed out if they are cut (the LA test depends on this - increased time to clot in vitro). Prof D'Cruz's did a talk at patients day 2015 about APS patients having a habit of bleeding out after just a needle biopsy (even with INR reduced to normal for the procedure).


I appreciate your reply. My concern is to at least start patients on something until further testing or pt. HX deems positive for APS. Then patients would at least have some treatment as to ward off stroke. I too am an "arterial clotter" x 2. But maybe if I had been given at least aspirin maybe the stroke may not have occurred. As far as the INR being between 2-3, we are being told by Dr Hughes himself that this is like treating the diabetic with half of the amount of insulin they need (see answer to "Nov question of the month" right here on this site), it speaks of " clot before you bleed", as well as, higher INRS right from Prof Hughes. Please write back here with your thoughts/ concerns. Also, If seronegative.. why not begin low dose aspirin? This has been part of my research. By the by, I did find and read table 6 mentioned in your post, and I believe it coincides with this post of right now. I am excited for your response. Thanks

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You can download the Fact sheet from Australia here. I take it with me when I have to see a different GP.

I am attending a conference here in a couple of weeks time to see Prof Khamashta. They are also having a free Patients day on the Wednesday but I paid $50 as a patient to attend all the sessions (reduced from $500 for all clinicians). Its an International Lupus conference and with special APS presentations.


Thanks Puska


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