ghic.world/self-help/blog/f...
Mary F
Professor Graham Hughes's Blog - Febr... - Hughes Syndrome A...
Professor Graham Hughes's Blog - February 2019
MaryFAdministrator
Written by
MaryF
Administrator
To view profiles and participate in discussions please or .
The ability to reply to this post has been turned off.
20 Replies
•
lupus-support1Administrator
As always, thank you Mary. I will repost to LUpus Patients Understanding & Support (LUPUS)!
Well thank you for all that you do also! MaryF x
HollyHeskiAdministrator
Thanks x
A sobering blog this month....
KellyInTexasAdministrator
Thank you Mary.
Dr Jill Schofield, USA Rheumatoligist who trained under Dr Hughes, cannot stress enough the link between migraine in the anti phospholipid Syndrome and stroke.
Reminder to patients: if you present with Livedo and migraine in tandem, make sure to bring this to your physician’s attention. The same arteroles are involved in thrombosis, and can be an indication that perhaps an anti platelet ( small amount!) could be considered as a dual therapy. ( each patient is different- on an individual patient to patient basis.)
Thank you, Prof Hughes. I still believe that (if) in the US a simple solution would be for the American Heart Association (AHA) -if they would simply add the APS blood draws to their stroke protocols this would provide quicker amswers. We have what they call ACLS (Advanced Cardiac Life Support) protocols in our emergency departments that cover protocols for heart and strokes that include blood draws but none specific for APS...i know because i had to be certified for this when i was still working in the Emergency Dept. I have tried to email them regarding this but i dont believe i have enough “clout” so i am not taken seriously...sad, as many lives could be saved if not helped. I dont know if they have the same in other countries? From my mouth to someone with the needed “clouts” ears. Cindy
And this certification has to be completed by all physicians and nurses working in the department every two years so its a good way to get ones foot in the door about the disease itself!🙏🏻🙏🏻
I only have experience with being treated by two major hospitals with stroke center protocol but Antiphospholipid testing is standard along with testing for genetic clotting disorders, like factor v and many others, and ANA in addition to looking for PFO with ASA ( another comorbid link to migraine with aura and stroke indepentant to APS) in non risk patients.
In addition, a ct needs to disprove hemorrhage as a cause before TPA treatment. And while in the ICU after TPA has left your body ASA and either heparin shots twice per day or if needed continuance heparin drip is utilized so APS treatment is covered by protocol even before tests results are concluded.
According to scan results CADASIL is also tested for. The case study the professor referred too sounds more like CADASIL an untreatable familial migraine disease, than APS to me.
Hi
I’ve never heard of CADASIL before and I’m really curious to learn more. Is this something you suffer with? I wonder how you know of it.
Prof Hughes points out that this patient actually tested positive for APS antibodies several times so what would make you think this patient didn’t have APS but this CADASIL condition instead?
I’ve had a very quick read and know very little of this condition. I’m not a migraine sufferer (until recently) but have suffered recurrent TIA and have some white matter lesions on my brain. My very knowledgeable neurologist even did a PET scan and found it very abnormal with severe hypo metabolism.
I have had numerous positive Lupus anticoagulant antibodies tests (pre warfarin and also a negative test thrown in the mix). However, I now fair reasonably well running an inr of 4 (still get some odd neuro symptoms!). So I just wondered how you differentiate between an APS patient, suffering with recurrent stroke, with positive blood tests and this particular condition?
There is no doubt with any of my APS specialists that I indeed have APS. As I say I’m just curious to know your knowledge with this and find out the difference.
Sorry if I’ve gone off topic!
Great blog as usual.
Thanks
Kelly 🇬🇧
Im not saying a Ct Scan wouldnt be done... what i am saying is that they should include APS testing also. The Ct scan is already part of the stroke protocol but the bloodwork for APS isnt...and although we need two tests, twelve weeks apart to be positive, at least it would begin here and save many not knowing why theyve had a stroke.
As many times patients are told it is due to age, weight, elevated BP, smoking and particular life style: sedentary, not fit. None of which I had or was.
Luckily i had an experienced neurologist at that time who gave me the initial test for it, he then looked further when my Lupus Anticoagulant came back positive on the initial draw from the ER and done in the hospital lab. Thats when they decided to look further and found out it was from Libman Sacks on my heart and realized the clot broke off from there and travelled to my brain. I was told it looked like a rifle went off in my head.
I for one am glad it was tested for then or i would not have thought to be tested for this and who knows what else may have happened.
I had not learned about APS/Hughes in nursing school and have been a Registered Nurse since 1980 and did most of my experience in three emergency departments: I was responsible for drawing the bloodwork asked for (ordered) by the physicians following ACLS guidelines/protocols, as well as, getting the patient into Ct Scan followed by administering TPA if warranted and i can tell you these blood tests were not done because the doctor didnt request them and they are not on “protocol”. I think this would be advantageous because many physicians here in the US arent educated about APS/Hughes: I know this from experience and working alongside them. Afterward i then asked around and know this to be true, its not just me guessing....
It is often correctly assumed that many people who have had a clot or are being treated for a clot might have a transient , i.e. False positive, result to antiphospholipid antibody tests. This explains the need for two test separated 12 weeks apart. If they tested but did not diagnose APS I must assume something other was going on. Most ischemic strokes are treated with heparin while in the acute phase in the ICU in the US at least and even with warfarin treatment the patient declined medically. This is atypical for most APS patients. It might have been sneddens syndrome but no LR was mentioned just migraines. Or it could be CADASIl. The type of infarct would be telling but scan results were not included in this anecdote. Unlike APS stroke and Ss CADASIL has lacunar infarcts more often.
No , I thank goodness , do not have CADASIl, it is a genetic disease similar to SS but with a faster decline usually.
I think the vague antidote with no proof provided just scares people who might just have migraines without APS into thinking they might need dangerous medical intervention to prevent such an outcome.
I’m pleased to hear you don’t have CADASIL! Not that I want you to have anything else either.
I’m a complete layman and don’t understand the different types of infarct or there meaning, so you’ve lost me there.
I’ve assumed the patient was diagnosed APS, because the blog is about APS patients and for the fact that he had strokes and tested positive on more than one occasion. Doesn’t that give him a diagnosis?
Excuse my ignorance, I’ve been diagnosed a few years but still have much to learn even after reading every medical journal available. You’ve obviously been studying up since your strokes! 
Kelly x
Hi, I'm on the opposite side to what you are saying, my first stroke 22 years ago, was firstly yes checked to see whether it was a bleed or clot? Yes a clot, no mention of Hughes/APS, this was in 2000, so it was becoming known by the medical profession then. Further stroke in 2003, with over 40 TIAs in between.
It was a further 8 years and continued headaches (started in my late teens and I have never treated them as migraine).
Once I was diagnosed, I found out at the point of both strokes I was tested for APS but my neurologist never followed up with the 12 week test.
I am triple positive and I was so relieved when I got my diagnosis, I would still rather have a diagnosis than not!!
I don't want anyone to go through what I went through, so yes please doctors test for APS, along with every other possibility of what causes their stroke?
Yes we are in the era of self diagnosing through the Internet which is dangerous but I think the more knowledge we and our doctors have can only lead us into getting support and confidence in dealing with our health.
Was the said patient someone treated by the professor or just someone he had heard about? I get the impression the professor never actually was medically involved with the decease, which is why I question the meaning behind the full story.
The Prof will have had a direct and detailed conversation with the family. His patients and cases and wider family cases are never named. His blogs are to inform his readership, and we are informed. The meaning is clear, diagnosis and treatment of the patient is key! MaryF
It doesn’t matter (to me anyway) whether Prof Hughes was directly or indirectly involved.
A patient suffered terribly with multiple strokes and multiple positive APS tests and was a migraine sufferer.
A genuinely good reason to test migraine sufferers for APS antibodies. Not to suddenly put them on high intensity anticoagulation, but to be aware and monitor any changes in health. Prevention is always better than cure, in the UK at least.
I think I just read this blog from a patients viewpoint and nothing more. No hidden agendas, just genuine concern.
Truly tragic story for the patient. I’m so grateful for the Drs who are trying to help prevent situations like this occurring. Let’s hope we can all benefit from research and knowledge and hope we can live better and healthier lives!
Kelly x
Roarah,
????
I’m not at all sure how you would have come to such a speculative position.
I am sure no one reasonable would ever disagree with you that arbitrary anticoagulation is a good treatment plan. It is certainly dangerous.
There are good reasons why the tests should be repeated. There are great points to the Sidney revision. Finding the balance is key.
We have some very good APS doctors here in the states. Lockshin was a wonderful Rheumatoligist, and Dr Erkan is a fantastic researcher. His pioneering work with mouse modeling / Rituximab has been very helpful in APS.
In fact, I am starting Rituximab in the next couple of weeks. I have his great brain to thank.
The APS pregnancy center at HSS is fabulous.
Dr Cervera in Spain- who trained at London Bridge.
Duke university- Dr Tom Ortel- ( Who does mention sero negative APS. ) I’m sure he’s quite careful in evaluating the patient history, just like Professor Hughes is. Professor Hughes was very careful in my case- all records were very carefully examined. A referral was requested with all DVT’s , and APS panel ahead of time.
I enjoy learning from you, Roarah. I am confused as to why you seem to have very little faith in Dr Hughes. Are your doctors making you feel that way?
My doctors ( not all...) here were initially a little conflicted between the two criteria, ( Sapporo/ Sidney revision) . They now are very clear sometimes the two criteria need to be looked at side by side. ( taking both into account with patients, especially when patient presents with history of seizures, ITP, multiple miscarriages, but perhaps not three in a row, migraines, etc. There seem to be advantages to both. )
It can only help doctors and patients alike, not harm. It gives a larger clinical picture.
I wonder if the APS criteria will go through another revision at some point and maybe have have sub-groups of patients with a wider of symptoms. I noted how Graham Hughes refers to APS as essentially a neurological disease in his talks. Maybe soon new auto-antibodies will be added to the list.
He certainly does 'highlight' the neurological symptoms, as he does other aspects of the disease. Many of us have multiple diseases, and on this forum we avidly suggest people really do check out things like B12, D, Folate, Ferritin and and adequate Thyroid testing. The wrong levels can make people very ill, and some can cause extra symptoms, on top of having Hughes Syndrome/APS. MaryF
The ability to reply to this post has been turned off.
Not what you're looking for?
You may also like...
Professor Graham Hughes' Monthly Blog - January 2019
https://ghic.world/self-help/blog/january-2019
Mary F
Professor Graham Hughes' December blog
Rain, rain, rain!
The wettest year ever in the UK. Monica and I drove to Aberystwyth in distant...
Professor Graham Hughes' Blog May 017
BLOG – May 2017
Waiting for a taxi to take me back to Basel airport for the short flight home to...
Professor Graham Hughes' March Blog 2014
March 2014
Dry and sunny at last. In the middle of planning this year’s ‘Ten Topics’ meeting....
Professor Graham Hughes' Blog October 2017
BLOG – October 2017
In October, I was a guest speaker in Porto, Portugal. It was at...
