Sticky Blood-Hughes Syndrome Support
8,433 members8,589 posts

Would You Like The Opportunity To Ask Prof Graham Hughes A Question? An Exciting New Opportunity For Our Members Only!

Would You Like The Opportunity To Ask Prof Graham Hughes A Question?  An Exciting New Opportunity For Our Members Only!

Yes you did read that correctly! So apart from Prof Hughes "Blog" of the month, we are starting a new "Question" of the month! We would like you all to write below the most burning question you would like Prof Hughes to answer for you personally. Every month he will pick one of the questions and personally respond to that person in a video recording.

Because the videos will be played back here on the Forum, please do not make the questions too personal, we want as many people as possible to learn from the answers he gives to your question, so the more unusual the question the better!!

If we have the same question asked by more than one person, then we will choose the person who has been a member of this Forum the longest for Prof Hughes to answer their question.

This will be a long running feature so don't worry if you are reading this months after its first posted, you can post as many questions as you like. We will pin this thread and remind everyone after a few months when we are running out of questions to answer - if that ever happens!

So this is your opportunity to ask the man himself something you have always wanted to ask him......think carefully.....lets hear from you!

85 Replies
oldestnewest

I would like to know please, does vit k make a difference to blood clotting when a person is not taking warfarin.

Like the other vitamins effect the body in different ways

I am asking because before I was diagnosed I felt worse when on a diet eating more vegetables

Thank you for the opportunity to ask

6 likes
Reply

Great stuff, good to see this plan of ours up and running. MaryF

Reply

What a brilliant opportunity .I have a nagging question that nobody seems tobe able to answer.I started with I.T.P. 30 years ago and hav'nt felt completely well most of that time .I've seen many doctors +had many Hospital stays because of itp. I was eventually diagnosed with a connective tissue disease and then 4 years ago with Hughes syndrome thyroid cysts +sjoergrens..My question is,could there be any connection between the longstanding ITP. and the development of Hughes syndrome. Thank you for the opportunity to ask a question . Elfie.

1 like
Reply

Hi Elfie - Thanks for this question. Can you just explain for the readers ITP please so that we are all clear. Thanks

Reply

Yes hi there sorry about that i'm so used to saying it .itp.isthe abreviation for immune thrombocytopenia. Caused by antibodies to platelets which usually help to clot the blood.whith Itp. the blood doesnt clot as well and causes bruises and nosebleeds etc. THANKS AGAIN ELFIE

1 like
Reply

Wow that's fantastic! I've got loads of burning questions but I'll have a think and post my best pick!

Massive thank you to the Professor for doing this x

3 likes
Reply

Agree with Mary;

great stuff!

We will learn so much from eachothers questions and the answer from our "medical headmaster."

Thank you from Kerstin in Stockholm

Reply

Could you tell me what the difference is - if there is one - between Sneddon's syndrome and Hughes syndrome when people have livedo and TIA or stroke please?

Before warfarin I had several TIAs and livedo on my palms only intermittently. Whenever my INR drops I suffer with the return of the mottling of my palms and tongue parathesia / swallowing issues although it's not as severe as prior to being on warfarin. I wondered if this is similar to Sneddon's or are they separate issues?

Thank you.

1 like
Reply

Wow what a great idea and opportunity. I need to think on it. thanks

Reply

Wow!! What a man, love him, wish there were more doctors like him.

1 like
Reply

I would love to ask if it is normal or rare for APS patient to have both a PFO & ASD in the heart to facilitate clots jumping to the other side of the heart so they miss the lungs and go straight to your brain? Also, is it normal to also have addditional clot causing problems from Protien S &Protien C and hemosisten levels in addition to the three main APS clotting issues?

Reply

What is ASD? I had a Patent foramen ovale (PFO) but am not familiar with ASD. Closing the PFO (hole in the heart) seems to have stopped the multiple TIAs that Inwsahaving, even with an INR of 3.3 when I had three TIAs in one day/

Reply

Tim47. An ASD is an artrial septal defect. As I understand it a PFO is a whole between two side of the heart in the lower lobe section where a ASD is a whole in the two chambers of the upper lobes of the heart. I could have that backwards but I don't think so. Its basically a PFO in the upper chambers of the heart creating the same clot jumping issue as the PFO. I was told I had on PFO & two ASD's. All have been close thru titanium umbrella implants. As u know they facilitate strokes buy allowing the clots to jump sides I. The heart and go straight to the brain. By the time I was diagnosed I was regularly having 8 TIA'S a day not alway sometimes just 3 or 4. I am sorry to learn u had a PFO because of the additional strokes they cause but I am glad u have had it repaired. At keast now we each no someone who was in the same boat. Its always nice to know u aren't out there alone. I do still wonder of its prevalence ins APS patients, because as u know they can seriously aspirate the problems.

Reply

Thanks for the reply. I was very surprised to learn how common a hole in the heart was, about 20% as I recall. Fortunately most never have a problem with it and live a normal life not knowing about it. I was also surprised at how routine the closure procedure was. What wasn't common, or perhaps more correctly, what wasn't common was the coexistance of PFO and Hughes. I was sent to Bristol and nobody amongst the many medics I met had heard of anyone in my situation. I went to see Prof Hughes in the end to get advice on bridging and we used a protocol that St Thomas' had produced- as an in patient. I still use it for various procedures including a tooth extraction last week but without being admitted, and manage all myself - my GP is familiar with me doing it and dentist was happy enough that I knew what I was doing..

I guess you may have Amplatzer devices fitted. I nearly fainted when I saw the size expanded, near enough as an old half a crown. I gather I'm worth about 7 k in scrap titanium! Hope yours work as well as mine seems to do.

Reply

My closure mad a tremendous difference in the number or stroke I know at one point I was having about 8 a day gettin on warfarin cut it toaaround 4/5 a. Day the closure surgery made strokes an unusual thing. Im glad u saw Prof Hughes, I live in the US so its not an option.i really wanted to known if it was common to have ASD & PFO with APS, since ur dr.s hadn't seen it I am assuming it's not. What did Prof. Hughes say about it? I had thought if it was uncommon perhaps I would be a good patient 4 study. I do know one thing for sure, I would never have gotten as bad as I am without the holes. When I saw my diagnostic Hemo I was well into a thrombotic storm

Reply

My PFO was discovered in 2009 and I got the distinct impression that it was very unusual to come across a patient with Hughes and a PFO not least as I had to do a heck of a lot of digging around trying to find any precedence for dealing with bridging. My recollection is that Prof Hughes and others thought that there would be many more out there but had not experienced the same problems as I was having that brought me to their attention in that way. I was over 60 when it was found. I had previously had all manner of heart examinations over many years but it had never been found, nor the calcified thrombus that's in there somewhere (I forget precisely where). Equipment and knowledge move on thankfully and I would not be surprised to learn of more cases coming to notice. I recently saw another cardiologist who brought up Hughes and has booked a heart MRI to see what is now going on and whether it may be Hughes related. A few years ago they'd not heard of Hughes. Have often thought that I'd make a good study but I guess the profession is spoilt for choice. Best wishes.

Reply

How wonderful! I will try to think of a good question.

Reply

Is there a platform where we could follow the up to date findings on Hughes e.g.: a blog or website that posts up to the min news concurrently?

3 likes
Reply

Not yet!

1 like
Reply

I would like to know, or maybe be reassured, that once diagnosed with APS and on appropriate treatment (eg warfarin, Xarelto etc) what is the likelihood of having another blood clotting event? At the moment, being newly diagnosed, I wonder if every ache or unusual headache is the start of another event. Thankyou Prof Hughes for your work here - I wish the discovery had been made a few years earlier and maybe then I could have had a successful pregnancy.

4 likes
Reply

Brilliant idea! So many questions we'd all like answers to but which one to ask? Thanks to you all and Prof. Hughes. 'M'

Reply

I was diagnosed at 22 in 1995 when I was hospitalised with what I later knew to be a TIA & kidney damage.

Roll forward to 2013 when I was rushed to hospital with a cerebellar brain haemorrhage that snowballed very quickly into CAPS. I survived obviously!

I'd like to know what the current thinking is on the trigger for this? I thought I had a bug for a while before however I had been very stressed for long time prior due to all sorts of personal things going on.

Thank you.

3 likes
Reply

My question is . I have had APS since 2015 , with many TIA's , my daughter had a TIA in march this year at the age of 19 and test very low cardioplin ( hope that the correct word ) she is just on Asprin , my sister has Lupus and my mother died in 1991 diagnosed with MS , now there saying she more that likely had APS . So is it genetic as my consultant says no .

My hemotologist put me on clonazepan Auden last year before I went on Warafrin can you explain what way these will help the APS ?

1 like
Reply

I would love to know more about Prof Hughes' opinions and explanation for migraine with aura and its relationship to APS (without the more severe manifestations of APS involved, eg stroke and miscarriage). He has said he thought it should be part of the diagnostic toolkit of medics diagnosing migraine (paraphrasing - can't find original quote) - has his work and opinion made any impact in this area? The doctors I've spoken to don't seem to know much about APS and nothing about a relationship to migraine.

Anecdotally, people given Warfarin for other reasons report that their migraine has stopped as a side effect. Does this mean that everyone with severe chronic lifelong migraine might have a level of APS, or is platelet aggregation something that anyone can have and doesn't mean they have APS? I hope this makes sense!

Also, does everyone with APS have migraine, and how can the link be proved when test can be sero negative?

3 likes
Reply

Hi

Just to answer part of your question - no everybody doesn't have migraine. I have never suffered headaches / migraine apart from twice last year in the weeks after a TIA.

I'm probably in the minority though!

Thanks

Kelly x

Reply

Thanks Kelly. It's so baffling, all this. That's why it would be great to hear more from Prof Hughes about it.

1 like
Reply

If you're asking among the group if everyone with APS has migraines - I will answer. I have had migraines all my life. Menopause didn't help. Warfarin has not helped. I do not have aura. I have APS, LA, FVL and autoimmune diseases.

Reply

Thanks for replying, Tofino. How difficult for you. Migraine is awful especially with other conditions as well, or maybe as a result of those conditions.

Reply

I don't have migraines at all.

1 like
Reply

Hi

I was diagnosed with a DVT and PE 11 months ago. I was subsequently tested for APS as had been displaying some other symptoms sometimes associated with this condition. The first two tests came back as positives but I was tested for a third time because the second test was conducted two days inside the testing window, The third test came back as negative and my haeatologist says that I don't now have APS. I still have daily headaches and pains in my joints, muscles and bones. These pains only seem to have come on around the time of being diagnosed with a DVT/PE. My haematologist has now put me on apixaban after previously prescribing warfarin and then tinzaparin. I am concerned that apixaban hasn't been proved to be affective against APS and that I will still clot and I might not be so lucky next time. There is a history of APS in the family. I am also homozygous for Factor 5 Lieden. What advice would you give going forward?

Kind Thanks

1 like
Reply

I live in NYC and have a rheumatologist at NY Presbyterian Hospital who doesn't follow my INR. She's the Director of the Lupus Dept. I have an internist who follows my INR. I had a stroke (cerebral infarct) 3/1/14. I just recently turned 70. I'm on Warfarin, have APS (dx at time of stroke) and there are mixed opinions--mostly negative about my going on Xeralto or a similar medication. I was told there was not enough research for stroke survivors for alternatives to Warfarin.

Should I be seen by an APS specialist or hematologist you can recommend in NYC? Health Unlocked has been so helpful for me to understand more about APS, INR range and so, so much more. Thank you.

Reply

Thanks for the information. If I had a chance to ask a question it would be - "what future issues will I be facing as a person with APAS ?

1 like
Reply

This is an amazing opportunity for us all so thank you for your work APsnotFab and any others in securing such a service. My questions are I have really struggled with warfarin for the last 4 years since diagnosis, due to many side effects that my GP practice and consultant dismiss as unrelated. I would love to try something else but no one will give me answers about how I would monitor my health and what symptoms outside of a catastrophic event I would need to be mindful of, what symptoms would alert me to the possibility that something is wrong? I don't feel reassured at the moment that changing to rivaroxaban for example is a good move due to my fears of having further clots or bleeds

Also I have been told by my GP practice and the local coag. clinic repeatedly that I must throw away my list of foods with high medium and low vitamin K and to eat "normally" as unless I am eating masses of vit. K there should be no difference in my INR. I have attempted this and had extreme reactions in my INR readings so I have resorted to consulting my list again. I also become extremely dizzy if my INR is high (over 3) and if it is below 2 I have lots of joint pains and headaches, my target is 2.5 but it fluctuates . I have been told by the professionals who care for me that these symptoms are nothing to do with warfarin and I've been investigated for just about everything else. My question I suppose is can someone have a hypersensitivity to warfarin because I never had any of these symptoms before and outside of one practice nurse who supports me totally I feel very alone when I read mainly how others have gained great benefits from warfarin thank you

Reply

I have Lupus, Sjrojens, Widespread arborizing telangiectasia, B12 Anaemia, and triple positive for APS. I havent had a blood clot yet, but I do suffer with cognitive dysfunction and migraines which have led to hemiplegic migraine with muscle weakness down my left side. I know that I shouldnt take anti-coagulation meds as I havent had a clot, so instead I have been prescribed statins to stop the platelets from sticking so much and Pizotifen 1.5mg for the migraines. The latter has made me put on 1 stone, I have also tried propranolol but that brought me out in dripping sweats and upset my stomach. I wonder if Graham Hughes can suggest a medication for people like me who suffer with fatigue, poor memory and concentration, migraines and muscle weakness, as they are so debilitating that I almost walked out of my part-time job. My GP said apart from Pizotifen there is no other alternative medication, but I wonder if Graham Hughes can suggest something? Thank you so much for this opportunity, kind regards to you all.

1 like
Reply

1dayatatime Although your question is for Prof Hughes, only one question per month gets answered so Im just going to cut in and say something in answer to what you have written.

The whole point of taking anticoagulants is to STOP you from having a clot and there is no written rule that says you cant take them UNTIL you have had one. Reading your symptoms it seems to me that you are in dire need of something stronger than what you are on as you are taking no real anticoagulation for someone who is triple positive. Who is your APS Specialist and where are you located? I think you need to see somebody who is more sympathetic and knowledgable so you can be more appropriately managed to make you feel better. Please PM any of the Admins if you need further support.

Reply

It was Prof D'Cruz that diagnosed me earlier in the summer with triple positive APS. I almost begged him to put me on some form of anti-coagulation but he said that was too risky as I would probably then suffer with bleeding problems so the benefits did not outweigh the risks. He suggested Statins and a treatment for migraine which should help all the other congnitive symptoms. The problem I have is that the migraine treatments seem quite limited and my GP has no other suggestions, this is why I wanted to ask the question. Unless some of our other members can suggest something? Many thanks for your reply xx

Reply

That's fine we will put the question forward however if things are not working for you then you should go back to Prof D'Cruz and let him know so he can review yor medications as obviously things are not working as they are.

Reply

This Dr is on your suggested Dr list - isn't he meant be one of the best :-O !

Reply

Please , Please DR HUGHES READ ON

We met years ago at St Thomas's. I have been stable and self monitored for 20 years out of the blue July 2016 I had seizures diagnosed with epilepsy on a high dose of -Toporiate /warfarin - INR of 4 , 8mg -still clotting , very depressed, at Addenbrookes Cambs I am not getting any answers. A & E 8 hours last night

Actually going back today with another clot.Please any ideas I cant take this anymore , I live rural stopped driving , whole life change after reading a few blogs on epilepsy mixing diagnosing with Hughes Syndrome and with my history and never ever in 21 years had a seizure this is just suspicious. I was mis-diagnosed at RF with TIA's.

|I am under the care of the Thrombosis Unit .I feel desperate -

MARY LEY

Reply

Mary, I'm so sorry you are having such a bad time. You may want to read Prof Hughes Blog for October which talks about a patient that has epilepsy.

I'm afraid these questions are not meant to be about personal individual cases but generalised questions which when answered will give benefit to the whole community. The questions themselves are sent to the Prof so he does not actually read this as far as I'm aware.

I'm sorry if this is not the answer you wanted to hear but you can always email the Prof privately at LBH if you want private advice. I can't say if he will be able to respond but you never know. Either that or get your Dr to write to him.

On a practical note, it sounds to me like you need to be under a Hughes Syndrome Specialist urgently so you need to look at the list we have just posted up and ask your GP to refer you to the nearest one. You may need to add LMWH if your INR is too low.

Please keep us posted with your progress.

Reply

I have another question for Prof Hughes please!

At patients day this year we did a survey on how many Drs we had seen and what alternative diagnosis we had been offered prior to our correct ones. My list mainly consisted of a list of neurologists and functional neurological disorder diagnosis. Does the Prof have a breakdown of the answers to this survey please so we can see how other patients have struggled with numerous Drs and wrong diagnosis?

thanks

Kelly x

Reply

I would like to Know which medicine and habits are better for a young person or whoever that have that Illnes. I am taking rivaroxaban because it allows me to have a more "normal" life but I am interested in know if it is the better and routine daily things which maybe I can do. for example with the migraines, loosing memory.... My brain worries me a lot. I want to study much more and sometimes it does not allow me . I am finishing my first degree and later I would like to do a master and I am thinking to study psychology for pleasure because I want to Know better how the mind and the brain works.

Reply

If positive aCL antibody test results increase from previous positive test results (67 units to 78 units over 3 months) , does this indicate a "worsening" of situation/concern? Or are all positive results considered the same?

Hx: 48 yrs of age with prior Hashimoto's, diagnosed w/ DVT in Feb this year and was positive aCL IgM (67u) after event, put on Xarelto until Aug and retested positive aCL IgM (68u), have been on low dose aspirin since and tested positive aCL IgM (78u) a few weeks ago.

Thanks!

Reply

Another question (Am I getting greedy?!)

Why do patients with Hughes Syndrome often get joint pains?

Is it the Hughes? Microclotting? Or possibly from another autoimmune condition?

Thank you x

Kelly x

2 likes
Reply

Hello Proffesor Hughes. I do wonder, is it proved to be better for our health and make us feeling better with a INR 3.5 -4, than i.e. 2.5-3 ? My specialist says it's not, just wondered if there are some research proving higher INR makes you better? For the moment my INR is 3.6 and still feeling dizziness, headache and having vision problems..

Reply

Does vestibular neuritis and APS have any connection? I have had a lot of difficult vertigo attacts in the past, but finally vestibular neuritis and doctors said it has nothing to do with my APS syndrome.

Reply

Why do some patients with 'stroke like symptoms' have a normal MRI which then leads to Drs disbelieving us or incorrect and delayed diagnosis.

Thank you 😊.

2 likes
Reply

I've been told my dementia is down to Hughes syndrome that I have can anyone please give me some information as my doctor don't know much about hhughes I'm 45 years old and fill 70 years old . thank you

Reply

#3 idea: If lovenox acts on prohibiting xa. Why cant everyone, including those with strokes be put on pradaxa or xeralto , or the same type oral anti coagulants as it's my understanding they prohibit xa also?

Reply

Here is my first question: Overwhelmingly the posts, suggestions, symptoms, and manifestations that are shared across the web concern the clotting factors associated with APS - TIAs, Migraines, etc. What is the current belief about the causes of the neurological manifestations of APS and is there any treatment?

1 like
Reply

I just saw an "associate" of Dr Hughes who told me that unless a patient has a clotting event, Dr Hughes would never treat a patient with a heparin trial or Coumadin.

I would love to know from him directly whether he would prescribe blood thinners in the absence of a clotting event, or with low level positive results.

2 likes
Reply

Could you explain having a positive test for APS for years and then a negative results to APS for over 2 years,and your approach to the above,as alot of professionals are confused.

Many thanks for the opportunity to ask a question

Reply

Have you found success in other methods for treating those with stillbirth and recurrent miscarriage who Lovenox, Plaquenil and Asprin were not effective for? I read something about high doses of vitamin D being helpful.

Reply

Can you please tell me how You would treat suspected microvascular AVN of the hips? After suffering with severe pain for 2 years with 'normal' MRI scans I was dismissed by Drs. My pain improved somewhat with warfarin after I had 2 TIAs.

However I now have a wonderful rheumatologist who states he believes I have micro infarcts in my hips and has increased my inr target to 4 and the pain has reduced again!

A pet scan has now been ordered to look for AVN. I was told keeping my inr high is the only treatment. Is there anything else you would do and is it likely over time this will progress?

Thank you

Kelly x

Reply

I have SLE/Hughes syndrome and (I believe an unrelated) clotting condition APC resistance.

My question is, does it matter what the underlying cause of the anticoagulant therapy is in terms of approach to treatment or is it based solely on risk?

Reply

I was originally diagnosed with APS in May 2016 with 2 positive lupus anticoagulant/anticardiolipin etc tests after having a DVT and 2 PE's - but because the second test was conducted inside the testing window the haematologist decided to test again for a third time. This time the result came back as negative and I was told that therefore I do not have APS - a relief afterall! However, I do still experience some other symptoms, including daily headaches, pains in limbs (including joint, muscle and bone pains), difficulty in concentrating at times, mixing my words up, tiredness etc. I have also suffrered form stomach pains, which on investigating, showed up nothing on the endoscopy result. Then a month ago, I had an episode of atricular fibrulation for no apparent reason and was admitted to hospital. I have had a further three episodes since. My question is this - could APS (if I have it) be a contributory factor? My GP won't refer me to an APS specialist and feel as though my health is deteriorating not improving. I am homozygous F5L and I am currently taking 5mg apixaban and bisoprolol fumarate for my heart.

Any advice would be hugely appreciated. Thanks

Reply

Hi Nicholas, Prof Hughes will not answer personal questions publically on individuals conditions. This would not be ethical when you are under the care of another physician. This feature is for general questions on Hughes Syndrome which everyone can benefit from the answers. Sorry if that is disappointing to you. Perhaps think of a general question you can ask!

Reply

Love this section of the site btw, wonderful!

My question is this:

Have you ever seen a connection between aneurysms in the brain and Hughes syndrome?

Also, what Is the youngest patient you have seen with Hughes, can it be detected if we suspect it quite early in a child before a clot?

Thank you so much for your time

Reply

I am still fairly new to this group and this is an old post I am replying to but is this the place to still ask Prof Hughes questions? And is this question of the month still continuing? It looks like there hasn't been one this month.

If I were to ask a question, I am curious about what a "borderline" APS diagnosis means, and can a person who is "borderline" go on to have more significant APS? I have also been curious about the correlation between false positive syphilis blood work and APS or Lupus. I have read that many with APS or Lupus have had false positives for syphilis testing during pregnancy. Thank you for doing this Professor Hughes!

Reply

Hopefully, this month but Prof Hughes is on holiday so it depends on his time on his return. Don't worry, its not going away for long!

2 likes
Reply

Thank you Lynn

Reply

Hi, the admin are in the midst of designing a new web page for us so a delay on Professor Hughes blogs - they will be back asap.

2 likes
Reply

My D-Dimer has been consistently 5-6 times higher than the normal high of .50 for 48 months in a row. What other tests if any would you suggest?

Example:

A persons blood pressure can always be 160 and that may be considered normal for them, and acceptable, but it's not okay.

Is it worth getting to the bottom of the high D-dimer results?

I just had a mid-pick installed in my arm to (Tick bite) deliver iv antibiotics and the technician told me I had about 6" of blood clots in my left arm. I treat aps with fragmin. No excitement there.

Just saw this monthly question offering, so hope I'm not too late.

~ Blue Skies To All ~

1 like
Reply

Surely if you have 6" of blood clots in your arm this would explain the high d-dimer results?

Reply

Makes sense.

1 like
Reply

I have been on Hydroxychloroquine since 2005. I was recently referred to opthalmology without me been informed. When I saw the consultant, I asked why I had been referred. He said to check for toxicity of of the medication in my eyes. He said there is evidence of toxicity. Does this mean I should stop taking the medication. I have to go back in 3 months.

Reply

At every lecture I have attended with Prof Hughes, when he has talked about plaquenil (or its replacement), he has said that there is no need for yearly eye checks as its a very safe drug on the dose we are prescribed - 200mg per day. I know some people take double that but all the papers I have read only mention issues on much higher doses.

If you have a pre-existing eye condition then its sensible to have annual eye checks which are recommended anyway for those with APS.

1 like
Reply

That's what I was wondering. At one point some years ago I was on 400mg , and did have a problem with constant flashing lights. My dose was reduced to 200mg and so far have been okay. I have recently had my yearly eye test at my opticians and things appeared okay. The referral came from my GP out of the blue with no explanation. I think I will be asking to speak to Manager at the surgery, as the consultant could not tell me why I was referee.

Reply

That's a good idea, I am also on 400mg but fortunately have no problems with my eyes, but still have them checked every year.

Reply

I wouldnt stop unless he advised you to at the time?

Hopefully just a precaution - I was told when I went on Hydroxychloroquine (2007) to have my eyes properly checked yearly by an opthaltologist because of risks.

If youre worried put a call or email through to his secretary and ask the question.

2 likes
Reply

Hi Bernie,

I agree with Holly and I also suggest you ask for a copy of the journal where he states toxity.

Best wishes from Kerstin

2 likes
Reply

Thank you for your replies. I feel my surgery is covering their backs as I was asked to see my GP by my opticians back in April as I had, had an episode of double vision and difficulty focusing and a big drop in my BP. I asked then to see the eye specialist but ended up having words with the locum Doc, and said no. I took the matter to the Manager who defended the doctor. However I saw Prof Hughes in June and mentioned what had happened with my sight, plus I was showing other symptoms during the consultation. Prof Hughes suspected Poly myalgia / artiritis and commenced on steroids. The results was rapid with my symptoms and my sight.. but the referral to the eye specialist came after Prof Hughes writing to the surgery. Sorry it's long winded. I will not see the locum anymore in the practice, as I had to justify why I was concerned.

1 like
Reply

How do I go about contacting Dr. Hughes? My series of symptoms span over 20 years. Been tested and retested. All tests are "inclusive." Some negative, some borderline. With each new problem to crop up, my doctor prescribed more medications until finding the right combo to relieve symptoms. Each new problem happened within a 1-2 year time frame...overlapping problems as each symptom was individually treated:

First: Myocarditis and CHF - treated symptoms;

Second: Sudden severe swelling of hands/feet/abdomen -Hospitalized- symptoms treated;

Third: Ulcerations of fingers/toes/cracking,bleeding - Hospitalized; Treated with Rx

Fourth: Purple hands, feet, nose and ears - Diagnosis: Raynaud's - Treated with Rx

Fifth: Type 2 Diabetes: No difficulty with Type 2 - Treatment with Rx

Sixth: Widespread Stroke - 75% Vision Loss; now down to 25% loss -Treatment with Rx.

Seventh: Atrial Fibrillation - Diagnosis by Neurologist- Continue taking Coumadin Rx.

Atrial Fib. ONLY happened after my PC decided to take me OFF COUMADIN.

Each new symptom overlapped the previous symptom except for AFib. This began after being treated with Crestor and allergic reaction to it). The stroke was unexplained by the original Dr. Recent neurologist stated that I had a "massive stroke" and he didn't understand how or why I servived! He also said that I should be totally blind and has no explanation regarding how I am still can see.

In all situations, the various doctors I've seen (Cardiologist, Rheumatologist, Neurologist) have absolutely NO IDEA WHY I've had these illnesses. All tests are inconclusive. ONLY ONE DOCTOR had presence of mind to continue to treat me with the medications chosen throughout this long journey. Neurologist will NOT treat.He said the Rx must be written by my PC. He said my stroke was wide-spread and that I now have AFib. He said I need to continue treatment with Coumadin, but Primary Care will NOT write Rx for it because he doesn't feel comfortable prescribing the medication.

I Wish there was a way to contact Dr. Hughes. NO ONE seems willing to help me. I tracked down my Retired Former Rheumatiologist spoke to speak with him recently. He remembered me and the Neurologist also was impressed that the Rheum. remembered me too. Neuro. said my case was perplexing,(as it was described by the Rheum to him). I have been so much better since beginning Coumadin back in 1998. To suddenly stop because the PC doesn't feel comfortable prescribing the medication is just unreasonable. State law mandates that the PC is supposed to be the administrator of the Prescription medication. My NEW Rheum. will not dispense the meds, nor will she give me Vasotec, only Procardia. I researched the types of doctors who are expected by the state to prescribe medications. It falls to the Primary Care or a specialist, neither of whom will take the responsibility to do so. I really would like to have Dr. Hughes' explanation regarding the following question: Why do I test Negative Every Time, yet with the combination treatments of Procardia XL, Vasotec, and Coumadin, I have been quite well. My former Rheumatologist was an extraordinary doctor and I believed he saved my life. He told me via our phone conversation, that he strongly believes I should NOT discontinue the Vasotec nor the Coumadin. But, since he no longer practices, he cannot prescribe or treat me. I need some help, please. Thanks very much.

Reply

I pmd you

Reply

Patatie50 Can I ask you to copy and paste this onto a new post rather than have it on this long running thread. You are likely to get fresh and up to date answers. Thanks

Reply

I am so sorry you are experiencing this have you tried to email him, Dr Hughes? You don’t say where you are located. Cindy

Reply

I would love to ask Prof Hughes a question about my experience of living with APS for 5 decades and subsequent treatment of warfarin therapy since 1990, my case was published in the BMJ in 1991.

This question I have categorically been told APS does not cause but I would be interested in Prof Hughes response.

Throughout my life on warfarin I have noticed a correlation between low inr’s (below 3 for me) and increased fatigue and muscle discomfort. I acquired a diagnosis of fibromyalgia 8 years ago. I have had bouts of severe sicca manifestations, like many APS patients I’ve read about, as they live with this condition throughout menopausal years. Not tested before this diagnosis, but found subsequently I did have bone dry eyes at that time.

My burning question is :

In your opinion does this diagnosis serve a purpose for people with clear cut autoimmune conditions?

1 like
Reply

Hi Kathy - I’m a little confused with what you are asking. First of all you said you have noticed a correlation of low INR - are you LA positive? It is known that people that have that antibody struggle to keep a stable or get a high enough INR.

You mention your Sicca symptoms and also a diagnosis of Fibro, it’s very common for people who get told they have that to actually have Sjogrens which commonly runs with APS. A high percentage of people do not pass the test for it but have all the common manifestations of the condition, much like can happen with APS.

So are you asking if APS causes either Sjogrens or other conditions that develop after an APS diagnosis? It’s also known that once you have one autoimmune diagnosis that it’s very common to develop others. It’s not the APS itself that causes that but the immune system that is all ready compromised. People who get our conditions are quite possible geneticly predisposed to the type of autoimmune condition we get, but as yet no one knows the actual cause.

So can you just explain what you mean by “serving a purpose” as I was confused with that, sorry.

Reply

I have had very high anticardiolipin antibodies, 300 plus, and beta2g the lupus anticoagulant is in my Inr slip, it has always said that so possibly I have all 3.

Reply

Hi ya sorry I confuses my self as well 😁.. I guess the bottom line of my question is to ask Prof Hughes what are his thoughts on APS patients getting diagnosed with fibromyalgia? I struggle to see the rationale behind this, as the symptoms overlap so much and once you have had that label it’s hard to shake it off.. as you mentioned I clinically have symptoms of the big 3, But adding another condition has not only confused me at a time when I was incredibly unwell with inr’s 1.4 - 1.9 it did also change how doctors treated me which to me seemed cruel, counterproductive as the stress worsened my symptoms! so I can not understand why some rheumatologist uses this diagnosis so freely and what purpose it serves.. I have listened to a few of his answers which has clarified what I was experiencing with my Inr dropping. I had a recent admission with possible DVT my Inr had stayed around 2.4 for weeks and I was also having clexane but those same symptoms came flooding back with a vengeance of muscle heaviness aches & fatigue which can reproduce the symptoms of “fibromyalgia “ . So I’m interested to know why is this diagnosis so popular when the symptoms of APS causes exact symptoms baffling 🤔Cheers kath

Reply

Another question less emotive 😜 is there any link between plantar fibroma’s of the connective tissue to APS?

I had ultra sound scans of left foot for ongoing plantar fasciitis that showed fibroma’s.. (this was linked by gp to fibromyalgia!) and totally disputed by the doctor that did scan and now I have also got a fibroma on the right foot... (sorry had to slip that it to demonstrate the frustration of the F dx!) kath

Reply

So first question - why is Fibro dx so often, thats quite a complex question. In my opinion, when the diagnostic criteria changed it open the flood gates to misdiagnosis. This is mainly because as you know there are no actual clinical tests that can diagnosis the condition. It is done mainly on pain score and questionnaire. That can be quite subjective however and opens the door to pointing in the wrong direction. A Dr is supposed to run other tests to exclude conditions that have similar symptoms, usually autoimmune conditions and the main one is low thyroid. Unfortunately, the present test for diagnosing a thyroid problem is also flawed because Dr's use a useless test called TSH. That does not adequately tell if a persons thyroid is working as it should be and therefore many people who have a low thyroid will end up being told they have Fibro. Secondly, those of us that already have an autoimmune condition like APS and could even have a diagnosed thyroid condition, often develop Sjogrens Syndrome, the joint aches and fatigue are typical of that condition. If tests are not run or a person is seronegative and they don't do a litmus test, then that can be overlooked. Where as Fibro has no medication that typically targets its symptoms other than pain relief, Sjogrens and other autoimmune conditions do well if Plaquenil (HCQ) is prescribed.

Finally, unfortunately, Fibro is also a perfect condition for lazy Dr's who think it can be a bucket all when they cant be bothered to do the detective work needed to get to the bottom of a patients symptoms. In the current NHS climate, with over worked busy Dr's who have less time and money, you can see its an easy option for them, as is filling them up with antidepressants or pharmaceutical company reps "encouraged" useless drugs! Having said all of the above I need to emphasis that you can still have Fibro and all the other conditions too but its important to get the correct diagnosis if you want the best outcome with treatment.

Next question - Plantar fasciitis, although this may well answer the first too! There have now been a number of studies that show an increased number of people who have Sjogrens Syndrome have PF. I also know someone personally who has ended up with huge problems due to SS. Here is a paper:

ncbi.nlm.nih.gov/pubmed/286...

I therefore urge you to get a proper diagnosis to make sure that Fibro is not the ONLY condition that you may need to be treated for.

1 like
Reply

Thank you so much. I will look at the link that is very interesting regarding PF. It was mentioned to me my allergy / sensitivity to septrin that I’ve had since my teens is also something you get with SS. I don’t mention my joint pains or muscle aches to my GP, as it would stress me if they said the F word 😜 (I had a fab GP a few years ago who I could tell her anything and she queried the dx and injected my PF with steroids which was such a relief after years of suffering) all my finger joints have nodules now and my big toe due to osteoarthritis & the team I’m under now are very good unlike my previous consultant.. the worse thing for me with living with this condition since the start of my other symptoms is not being believed.. I do feel more empowered these days and that was since joining this site and attending St Thomas’s patients day - I dread to think how awful it must be for seronegative sufferers! You all do such a wonderful job thank you xx

2 likes
Reply

Hello Professor Hughes! Although I tested positive for antiphospholipid antibodies way back in 1996 while doing invitro fertilization, I had my first embolic event which caused a mild heart attack in May 2018. Ever since then I have suffered from Prinzmetals angina as my angiogram showed perfectly clean coronary arteries. Do microclots cause Prinzmetals angina? What do you think is the best medication to treat Prinzmetals angina? Is my heart suffering from the ischemia which occurs with these attacks? Will I have this pain for the rest of my life or is Prinzmetal's something that waxes and wanes? Thanks so much for answering our questions!!! Angela Ledbetter

1 like
Reply

Given the dizzying complexity and array of possible APS symptoms its no wonder this this question list is rapidly expanding.

My questions is about the implications for long term LMWH use. I was diagnosed with APS approx fifteen years ago following an extensive DVT. After Warfarin treatment I commenced twice daily injections of Heparin over five years ago. As per Dr Hughe's acknowledged article 'APS: What Rheumatologists Should Know about Hughes Syndrome', the Heparin significantly improved all of my symptoms and I lead an active life (touch wood).

I anticipate remaining on Heparin for many years yet and and would like to ask what the long term potential issues for its continued use are and what can be done to minimise these? Many thanks.

1 like
Reply

You may also like...