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!

41 Replies

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  • 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

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

  • 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.

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

  • 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

  • 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

  • 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

  • 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.

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

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

  • 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?

  • 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/

  • 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.

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

  • Are they any closer to finding a cure?

  • 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?

  • Not yet!

  • Thank you for wanting to hear us!

  • 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.

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

  • 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.

  • 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 ?

  • 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?

  • 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

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

  • 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.

  • 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.

  • I don't have migraines at all.

  • 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

  • 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.

  • 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 ?

  • 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

  • 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.

  • 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.

  • 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

  • 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.

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

  • 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

  • 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.

  • 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

  • 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.