blood clots lungs

Hey everybody. I joined this site a while back as my boyfriend has Hughes Syndrome. He was diagnosed with it 1 year ago and has blood clots on the lungs. He gets very out of breath and his heart beats very fast to compensate for his lungs not absorbing enough oxygen. He has been on Warferine to treat this. but sadly after one year the blood clots have not reduced or gone away. He has recently had the news that his brain is getting less oxygen and causing damage to brain cells. He has been asked to sign a form allowing them to prescribe dangerously high levels of warferine now to battle this.

Please has anyone been in a similar situation to offer advice as my boyfriend is at the point of feeling like he is not getting any better and is really down..

39 Replies

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  • Hello.

    Where are you from and who is managing his APS?

    It might be worth suggesting that they try him on Fragmin (low molecular weight Heparin) injections instead of Warfarin to see if that makes a difference. It did with me and I am now on Fragmin for lief and I feel much better than I did on Warfarin. I had clotting incidents on Warfarin but I have not had any on Fragmin.

    Dave

  • My boyfriend lives in Bournemouth (and myself Exeter) and I do not know who is his APS specialist.. I will ask him. Thanks for your information; I will pass this on.

  • Update. Further to my reply last night thank you Manofmedip, I have passed this information on to Kevin. He has replied below :)

  • Hi it is so important that your boyfriend has a designated Hughes Syndrome/APS Specialist to manage his condition and help his GP look after him.

    Hide South East Specialists »

    NHS Specialists

    Professor KevinDavies

    Consultant Rheumatologist

    Department of Rheumatology

    Royal Sussex County Hospital

    Eastern Road, Brighton

    East SussexBN2 5BE

    Telephone: 01273 696955

    Dr Christopher Edwards

    Consultant Rheumatologist

    Department of Rheumatology

    University Hospitals Southampton NHS Trust

    Tremona Road, Southampton

    Hampshire SO16 6YD

    Telephone: 02380 798723

    DrGillianEvans

    Consultant Haematologist

    East Kent Haemophilia Centre

    Kent and Canterbury Hospital

    Ethelbert Road, Canterbury

    KentCT1 3NG

    Telephone: 01227 783157

    Dr Yousuf Karim

    Consultant Immunologist

    Department of Immunology

    Frimley Park Hospital

    Portsmouth Road, Frimley

    SurreyGU16 7UJ

    Telephone: 01276 604604

    Dr David Keeling

    Consultant Haematologist

    Department of Haematology

    The Churchill Hospital

    Old Road, Headington

    Oxford OX3 7LE

    Telephone: 01865 225318

    DrDenisede Lord

    Consultant Rheumatologist

    Department of Rheumatology

    Kent and Canterbury Hospital

    Ethelbert Road, Canterbury

    KentCT1 3NG

    Telephone: 01227 766877

    DrDenisede Lord

    Consultant Rheumatologist

    Department of Rheumatology

    Victoria Hospital

    London Road,Deal

    KentCT14 9UA

    Telephone: 01304 865406

    DrDenisede Lord

    Consultant Rheumatologist

    Department of Rheumatology

    Queen Elizabeth the Queen Mother Hospital

    St Peters Road, Margate

    KentCT9 4AN

    Telephone: 01843 225544

    Dr Sam Pantakalam

    Consultant Rheumatologist

    Department of Rheumatology

    Eastbourne Hospital

    Kings Drive, Eastbourne

    East Sussex BN21 2UD

    Telephone: 01323 417400

    Dr Sue Pavord

    Consultant Haematologist

    Department of Haematology

    The Churchill Hospital

    Old Road, Headington

    Oxford OX3 7LE

    Telephone: 01865 225318

    DrAnnScott-Russell

    Consultant Rheumatologist

    Department of Rheumatology

    William Harvey Hospital

    Kennington Road,Willesborough

    Ashford,KentTN24 0LZ

    Telephone: 01233 616267

    DrAnnScott-Russell

    Consultant Rheumatologist

    Department of Rheumatology

    Royal Victoria Hospital

    Radnor Park Avenue, Folkestone

    KentCT19 5BN

    Telephone: 01303 850202

    DrAnnScott-Russell

    Consultant Rheumatologist

    Department of Rheumatology

    Buckland Hospital

    Coombe Valley Road, Dover

    Kent, CT17 0HD

    Telephone: 01304 201624

    Dr Hassan Shehata

    Consultant Obstetrician

    St Helier Hospital

    Wrythe Lane, Carshalton

    Surrey, SM5 1AA

    Telephone: 020 8296 2542

    DrRobinWithrington

    Consultant Rheumatologist

    Department of Rheumatology

    William Harvey Hospital

    Kennington Road,Willesborough

    Ashford,KentTN24 0LZ

    Telephone: 01233 616221

    DrRobinWithrington

    Consultant Rheumatologist

    Department of Rheumatology

    Kent and Canterbury Hospital

    Ethelbert Road, Canterbury

    KentCT1 3NG

    Telephone: 01227 864233

    Dr Sarah Woodham

    Consultant Rheumatologist

    Department of Rheumatology

    Hillingdon Hospital

    Pield Heath Road, Uxbridge

    Middlesex UX8 3NN

    Telephone: 01895 279682

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    NHS Specialists

    Dr Sarah Allford

    Consultant Haematologist

    Department of Haematology

    Musgrove Park Hospital

    Parkfield Drive, Taunton

    SomersetTA1 5DA

    Telephone: 01823 333444

    DrSarahBartram

    Consultant Rheumatologist

    Department of Rheumatology

    Salisbury District Hospital

    Odstock RoadSalisbury

    WiltshireSP2 8BJ

    Telephone: 01722 429217

    DrAndrew JohnBell

    Consultant Haematologist

    Department of Haematology

    Poole General Hospital

    Longfleet Road, Poole

    DorsetBH15 2JB

    Telephone: 01202 665511

    Dr Frank Booth

    Consultant Haematologist

    Department of Haematology

    Weston General Hospital

    Grange Road, Weston-super-Mare

    Somerset BS23 4TQ

    Telephone: 01934 636363

    Dr Desmond Creagh

    Consultant Haematologist

    Department of Haematology

    Duchy Hospital

    Penventinnie Lane, Truro

    Cornwall TR1 3UP

    Telephone: 01872 252501

    Dr Paul Creamer

    Consultant Rheumatologist

    Department of Rheumatology

    Southmead Hospital

    Westbury-on-Trym

    Bristol BS10 5NB

    Telephone: 01174 141614

    DrJeremyHobart

    Consultant Neurologist

    Department of Neurology

    Derriford Hospital

    Derriford Road, Crownhill

    Plymouth, DevonPL6 8DH

    Telephone: 01752 202082

    Dr Sally Knights

    Consultant Rheumatologist

    Department of Rheumatology

    Yeovil District Hospital

    Higher Kingston, Yeovil

    Somerset BA21 4AT

    Telephone: 01935 384955

    Dr Ellie Korendowych

    Consultant Rheumatologist

    Department of Rheumatology

    Royal National Hospital for Rheumatic Diseases

    Upper Borough Walls, Bath

    Bath BA1 1RL

    Telephone: 01225 465941

    Dr Jason Mainwaring

    Consultant Haematologist

    Bournemouth and Poole Haemophilia Centre

    Royal Bournemouth Hospital

    Castle Lane East

    Bournemouth, Dorset, BH7 7DW

    Telephone: 01202 704786

    Professor Neil McHugh

    Head of Connective Tissue Diseases

    Department of Rheumatology

    Royal National Hospital for Rheumatic Diseases

    Upper Borough Walls, Bath

    Bath BA1 1RL

    Telephone: 01225 46594

    DrTimNokes

    Consultant Haematologist

    Department of Haematology

    Derriford Hospital

    Derriford Road, Crownhill

    Plymouth, DevonPL6 8DH

    Telephone: 01752 202082

    Dr Samir Patel

    Consultant Rheumatologist

    Department of Rhematology

    Southmead Hospital

    Westbury-on-Trym

    Bristol BS10 5NB

    Telephone: 01174 141140

    Dr Wayne Thomas

    Consultant Haematologist

    Department of Haematology

    Derriford Hospital

    Derriford Road, Crownhill

    Plymouth, Devon PL6 8DH

    Telephone: 01752 437041

    Dr Alistair Whiteways

    Consultant Haematologist

    Department of Haematology

    Southmead Hospital

    Westbury-on-Trym

    Bristol BS10 5NB

    Telephone: 01179 505050

    MaryF

  • hi, I tried to get hold of doctor bell in poole hospital. they said he wasn't there anymore. he was also listed at a private hospital, but he is not their either

  • Please try another from the list, that is your best bet. MaryF

  • Hi Mary, please can you tell me who is a specialist in the Leicester area, having difficulty getting INR right and been pretty poorly over last few weeks. Been working but a real struggle.

    Thanks Dean.

  • NHS Specialists

    Dr Khalid Ayes

    Consultant Stroke Physician and Lead Clinician

    Kettering General Hospital

    Kettering

    Northamptonshire NN16 8UZ

    Telephone: 01536 492000

    Dr Richard Gooding

    Consultant Haematologist

    Leicester Royal Infirmary

    Infirmary Square

    Leicester LE1 5WW

    Telephone: 0116 2586534

    Dr Rachel Jeffery

    Consultant Rheumatologist

    Department of Rheumatology

    Northampton General Hospital

    Cliftonville, Northampton

    NorthamptonshireNN1 5BD

    Telephone: 01604 545654

    Dr Karyn Longmuir

    Consultant Haematologist

    Kettering Haemophilia Centre

    Kettering General Hospital

    Rothwell Road, Kettering

    NorthamptonshireNN16 8UZ

    Telephone: 01536 492000

    Dr Bethan Myers

    Consultant Haematologist

    Department of Haematology

    Lincoln County Hospital

    Greetwell Road, Lincoln

    Lincolnshire LN2 5QY

    Telephone: 01522 512512

    Dr Bethan Myers

    Consultant Haematologist

    Department of Haematology

    Leicester Royal Infirmary

    Infirmary Square

    Leicestershire LE1 5WW

    Telephone: 0116 2586534

    Dr Marian Regan

    Consultant Rheumatologist

    Department of Rheumatology

    Royal Derby Hospital

    Uttoxeter Road

    DerbyshireDE22 3NE

    Telephone: 01332 788380

    Dr Marian Regan

    Consultant Rheumatologist

    Department of Rheumatology

    London Road Community Hospital

    Devonshire House, London Road

    DerbyshireDE1 2QY

    Telephone: 01332 347141

    Dr Gill Swallow

    Consultant Haematologist

    Department of Haematology

    Queens Medical Centre

    Derby Road

    NottinghamNG7 2UH

    Telephone: 01159 249924

    Dr Sonia Swart

    Consultant Haematologist

    Department of Haematology

    Northampton General Hospital

    Cliftonville

    Northamptonshire NN1 5BD

    Telephone: 01604 545839

    Dr James Taylor

    Consultant Rheumatologist

    Department of Rheumatology

    Northampton General Hospital

    Cliftonville

    Northamptonshire NN1 5BD

    Telephone: 01604 545647

    Dr Yunus Tayob

    Consultant Obstetrician

    St Albans City Hospital

    Waverley Road, St Albans

    Hertfordshire AL3 5PN

    Telephone: 01727 866122

    Dr Christopher Tew

    Consultant Haematologistt

    Department of Haematology

    Lister Hospital

    Coreys Mill Lane, Stevenage

    Hertfordshire SG1 4AB

    Telephone: 01438 781149

    MaryF

  • Oh brilliant, my specialist is Dr Gooding and I'm seeing him at the end of this month.

    Many thanks Mary

    Ps my new employer was asking if my condition is covered under the DDA can you advise what I say please?

    Thanks again

    Dean

  • I think if you are disabled, for whatever reason it will be taken into account! MaryF

  • My dear, I am so so sad to read your message - you must be feeling helpless. I have no words of help, beyond that you must talk to a phlebotemist consultant without delay. Ring your hospital & get reception to out you through to the right dept, & get the help you need. It truly is a case of fighting to speak to the right people - it can be difficult, I do know, but wish I had done this one thing years ago. I too had clots on the lungs, & have been on 5mg Warfarin for nearly 5 yrs, now stable. I have lupus, Hughes' syndrome (a surviving patient from Graham Hughes' original research programme from the early '80s), am also a coealiac! Have chronic osteoporosis, hyperthyrodism, & have had a lifetime of chronic bowel problems having just had Delorme's operation in June which was really awful - I am nearly 85 but think it really helps to be positive & forget

  • thank you for your reply Claire.. it is good to know that you have been on 5mg Warfarine and it has helped you remain stable x

  • Hi purplestars,

    Your boyfriend can be happy to have you to help him!

    The problem is that he needs a SPECIALIST of APS. That is a must! Sometimes we need high levels of Warfarin as we have so thick blood. I guess they have suggested an INR around 4.0. I have that. With the right Specialists (even an lung/heart Doctor) around him he will manage as he also is young and has had it only one year.

    I have Pulmonary Hypertension and leaking heartvalves and do Ecocardiographies every year. The Doctors are nowadays so skilled on lung and heart-issues so with the best Doctors he will be fine I am sure.

    Very good advices from Mary and Dave also and a list of different Specialists. When you ask about the name of the Doctor who is with your boyfriend at present. also look at the list if he is on it perhaps.

    Best wishes from Kerstin in Stockholm

  • Thank you for the reply Lure2

  • Twelve years ago I had a stroke after experiencing shortness of breath, undiagnosed by my GP at the time. Whilst under the care of a London hospital,many clots were discovered on my lungs and I was subsequently diagnosed with APS.I made a good recovery from the stroke and I am now taking warfarin which is very well managed by my present GP and Dr.H.Cohen at U.C.H. Fragmin was necessary for me recently whilst undergoing minor surgery. Warfarin has to be taken with careful management and understanding on behalf of the patient.It seems to me that your boyfriend has not received the correct management and guidance necessary for living with APS and the necessary treatment.Hope all goes well.

  • thank you for your supportive message jagessar.. glad you are doing well.

  • Thank you so much for all of your replies.. I have only just seen the replies..... my boyfriend is also a member here and reading the messages gratefully... hopefully he will find the emotional strength to open up on here too soon xx

    This afternoon I will take time to read all and answer properly .. take care all and have a good day...

  • When I asked b/f this morning as to who his APS specialist is the answer I have just got (via skype message) and its easier just to paste this rather than rewrite: (and he doesnt mind me doing this btw)and please bear in mind that he gets brain fog sometimes :) :

    APS SPECIALIST

    "I don't have one- i was supposed to see doctor Mainwaring, who is a haematoligist, but instead i got the same lung specialist i have had all along, the one who has got so much wrong. he says he talks to dr Mainwaring about me but he never asks about anything but my lungs, and seems uniterested in the side effects bear in mind he was the one that had me on rivaoxaban for 8 months, when it wont work with my illness - not even cleared for treating aps ( i didn't know that then)- I think my specialist is doctor hughes, not sure though..."

    When asking about Warferine the answer is:

    "they are aiming for an INR of 3- 3.5. however after the lung perfusion test they have asked for it to be upped a lot. the amount i take varies week to week, but usually about 4mg"

    He is only on Warferine for treatment at present and painkillers.

    I have suggested he ask about oxygen bottle as treatment due to his low brain oxygen levels.. he was offered this a year ago but declined, but I think it would be a good idea. so he is going to ask doctor about this too..

  • Hi. I am purplestars boyfriend. My name is kevin. I have looked on posts here before, infact a lot of what I have learned about aps has come from here.

    My lung clots were first diagnosed October last year. That was after a long period were my doctors said my problems were stress and anxiety. I pushed and pushed, and oddly enough the day they said I might have clots was they day after I collapsed on a short walk to my local shop.

    purple has told you my medications. Too say I am frustrated about my recovery would be an underestimation.

    saw a doctor a couple of months ago that said unless they could control of my clots I would have the hear and lungs of a 70 year old in 2 years. not a nice though (unless you are 70)

    running out of options and ideas. thanks purple for posting

  • Hi Kevin

    It might be worth you going to see Prof Hughes or one of his team, privately, at The London Lupus Centre, London Bridge Hospital.

    I stick with my earlier suggestion that you ask for a trial of Fragmin, as an alternative to Warfarin.

    Dave

  • I called them, their fees are out of my range unfortunatly

  • Ah, ok. well, you could still ask whoever is managing your APS if they would put you on a trial of Fragmin, perhaps for six weeks.

    Dave

  • You will get good advice from the administrators on this site. They are VERY knowledgeable and helpful.

  • thank you Baba

  • I have left a message for doctor Mainwaring. I know his name and he is on the list posted. hopefully he will call back

    and thanks everyone for your replies, and thanks purplestars for finally making me do this :-)

  • totalus if you don't get a response from the secretary of Dr Mainwaring then you should urgently consider another name on the list regardless of if it means you having to travel, as your condition urgently needs to be reviewed and if it were me I would not be hanging about. I'm not impressed frankly with this Dr for not wanting to see somebody in your condition so I'd feel happier if you did see somebody who agreed to see you more urgently and who does NOT want to give you any oral anticoagulants as you do not fit the criteria for the only one that has been tested thus far for APS.

    Personally I think you should be under Prof Hunt at St Thomas and you should ask your GP for an urgent referral there tomorrow given your condition!

    Please keep us updated and do ask for help if you are getting nowhere.

  • Thank you APsnotFab - your reply was valuable

  • 😇

  • Ask and acquire Fragmin shots immediately unless you have some health condition that would not allow it.

  • thanks for all the advice. I have tried some other doctors today, but none have comeback. I wont give up though :-)

    regards the hughes hospital, is the treatment that much better?

    will ask about fragmin when I finally get a doctor that will help

  • UPDATE - they are increasing my wharafrin to try and get INR of between 3.5 and 4.5 -target 4. It was previously 2.5 to 3.5. They also want to check me twice a week.

    I have made contact with the Nuffield private hospital with a view to getting a second opinion.

    Thank you all for your support and advice

  • Do push for a Fragmin trial please, Professor Hughes himself advocates this when Warfarin is not suiting an individual patient. MaryF

  • Hi, I wonder if you have tried to get a referral to Prof Hunt as your Specialist APS-Doctor?

    Yes, some Specialists are better than others and prof Hunt is one of them. APsnotFab suggests this doctor and an urgent appointment. I would definitely follow her advice. You should have the best - it is your life.

    Why I say this is that I have been on this site for at least 4 years and for one year I was also an Admin and I trust the Admins 100 %. We both know that we need a Specialist for our illness.

    As to the Warfarin I have today an INR between 3.5 - 4.0. I get a Fragminshot if the INR goes to low. I have Pulmonary Hypertension from this illness.

    I get frightened when you do not take your situation seriously. I know what I am talking of!

    Kerstin in Stockholm

  • Yes totalus this would be a very very good idea. MaryF

  • thank you I will pass this on to Kevin

  • Good news guys - Kevin has received a call from Dr Mainwairing and he is taking over the case and proceeding to do other tests.. all is going in the right direct it seems.. I, in the meantime, will remind Kevin of the helpful suggestions you have all put above and ask him to consider this.

  • That's great news. All I would say is that if Kevin was prepared to go private then I would go to the best and that would be Prof Hunt. If you want her private contact details just in case to make an appointment, then please let me know, you can always PM me.

  • UPDATE

    Dr Mainwaring has been great. He has asked for my vit D and calcium levels to be checked. Already requested an appointment with a rheumatologist, and also things they need to investigate Fibro Myalgia. Even got a personal letter from him the post today.

    All of a sudden I am feeling much more positive !

    I want to give hima try before I look at going private.

  • Thats great and I hope it works out... but please be aware that Prof Hughes often talks about Fibro being either Sjogrens or Thyroid problems or even both. These two conditions often run alongside APS but the tests in particular for thyroid are bad and you would need in-depth ones done probably by an Endocrinologist to be sure nothing is going on. If you suffer dry mouth/eyes the sjogrens is a likely cause.

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