How do you know if you APS specialist is actually that?

I have had a pulmonary Embolism maybe 2 or 3 and was possibly diagnosed with APS as sero negative by Rheumatologist in my home town.

I was struggling with Brain Fog and not remembering people's faces so asked my GP if warfarin Haematologist would allow me to increase INR to 3-4.reply was absolutely not.

I asked my GP to refer me to London and with help from APS support group Kate i went to see Prof Beverley Hunt at the heamatology/haemophilia centre at St Thomas, who has dealt with me in a very professional way. My first tests were negative and I went back for a repeat and was told that i would be discharged after that 2nd visit. Then I got a phone call telling me that the tests were now positive and to reurn to clinic. That's when I first saw Prof Hunt who saw the livedo and the arthritis in hands and and feet. She increased the Warfarin to 3-4 and sent me for memory tests at Guys, and prescribed Plaquenil. I now see Dr Breen who is part of Prof Hunts team, who communicates with consultant in Home town and she is keeping me on the straight and narrow for Cerebral Aps.

I just thank God I have been seen and supported by a great Team who listen respond and communicate.

My home team Warfarin Clinic say that there is no-one like me and they continue to treat people at an INR of 2-3. I can't believe that they are dealing with people's lives like that in such an appalling negative way

I thank God that my GP allowed me to be referred to London and my APS is being dealt with appropriately. I just feel sorry for all those in my home town who aren't

I recently saw the named APS Haematologist in my home town who wanted to change me to the new medication even though London says NO I must remain on Warfarin.

How can this person be named as the APS consultant when they are not following APS protocol

I do hope that somehow something may change for the people of my home town that they may receive the correct training both in the hospital and community. But I am just a minnow in a pond full of big fish. I cannot make a difference.

Dr Breen tells me that they are willing to go and do training but I have no influence in my home town

14 Replies

  • Hi

    I'm so pleased you're now being looked after well.

    I've had concerns over certain Doctors being named or consequently not named as APS / Hughes specialists.

    However I recently found out that the current lists we see on websites are patient led lists. So they aren't official APS experts but rather Doctors who patients have had a good experience with in relation to the condition. This unfortunately doesn't mean they know everything.

    I've got several APS specialists from the list but it's been proven they don't know it all - so I'm off to London again next week in my quest for further answers.

    Take care

    Kelly x

  • Hi Kelly,

    Good Luck to you!


  • Hi Peecue,

    I think that perhaps you will be able to educate the Doctors about our illness in a kind manner of course. Do never get up. Knowledge is power!


  • Sorry; I meant of course "give up". Horrible if you would never get up!


  • Unfortunately said Haematologist has just discharged me as I'm being seen in London so even though I tell him I'm not allowed to take new drugs as I have cerebral APS he still trying to convert me. And tells me he's now the recommended specialist for APS!

  • We have a lot of funny commercials over here in the US. One commercial shows a couple buying a car and the salesman is giving them a pitch – and the skeptical couple says "show me the Carfax!" ( Carfax being a new data system that records accidents and repairs by serial number. )

    That said – if you should again see that doctor who is pitching that new med ( and I'm hoping you won't have to) ask him which studies or data he is referencing that shows that this new med is effective on cerebral APLS. "Show me the Medfax.

  • Hitting so close to home... says the Texan. I don't like the fact that patients can say "had a good experience with this particular doctor regarding APS" and presto now the doctor is on the APS specialists list in England.

    I thought this was just the American nonsense... however, I must say recently I looked at APSFA (APS Foundation of America) and it had improved. There was a ldictord who were on the board of directors of foundation. They recognized SN-APS . Very nice! Progress! Also a very nice link to migraines- specialized neurologists who white very informative articles about migraines and management.

    APSnotFAB... last paragraph! Fir you!

  • This is a very interesting conversation. We have known for sometime that there is a huge gap in Hughes care and this was just ONE of the reasons why we formed our new global GHIC to help bring together medical professionals from around the world. These will all be specialists, hand picked by Prof Hughes himself and invited to join us. We will have at least 40 professionals, Doctors, researchers and specialists who will help spread awareness of this condition and be advisors for us.

    As has been said above, patient formed recommended lists can be subjective because what is a positive experience for one patient may well not be for another. Whilst they can at least give a patient a guide to a Doctor who has general knowledge in an area, it still can be hit and miss - and we all know about catching someone on a bad day!

    To answer your question directly, If it was me I would do my own research. Start with someone that has a recommendation either from another Dr or another HS patient. Then check them out and if necessary call the secretary and ask how many HS patients they see. For me personally I would want to know that they have a specific HS clinic not just a Haematology clinic or a Rheumatology clinic that sees all the generalities of those specialties. Check if they have written research papers or been part of teams that have. Finally check if they actually deal with the sort of symptoms and manifestations of the disease that affect you. You don't want to go and see a person who deals with Obstetric Hughes when you have mostly neuo problems.

    Of course sometimes specialists are few and far between, out of the big cities and you feel you must take what you can find, because anything is better that nothing. However, sometimes its better to have at least one good consultation, even if that means travelling a long way, even out of state or country, just to get the best advice and take it back to your local Dr to administrate there.

    Our aim is for everyone to get access to a Hughes "Specialist", wherever they may live. Only by educating Doctors will we be able to achieve that and I hope that many of you will support us with that aim.

  • Great as we all are all trying to find the proper care here. I Can't wait for this, as you well know how I'm always trying for myself and others! Thank you, thank you, thank you!!!

  • Can you direct me to a specialist in my area please. Solihull, West Midlands, England?

  • It's on the pinned posts to the right of this page or if on a mobile scroll down to the bottom. It's only for Drs in the U.K. Right now.

  • Thanks APsnotFab. That is so helpful. When I look at the website and see his name there it concerns me as of my experience he is a Haematologist who see me once in a blue moon as I never see the same person at that department. Sometimes a consultant, sometimes a registrar named as just AN the Warfarin Clinic Dr doesn't have any protocol for me to self-medicateas I'm the only one being treated in this way. So there is so much for people to be taught. I really would love to make a difference but we are a back water town. Not a city, and that affects all manners of care.

    I will definitely be travlingerie all day to get there and home just to be treated correctly

  • Hi. I strongly suggest you get in contact with either Lesley Regan at St Mary's Hospital or Mr Raj Rai at Imperial College London. They are excellent and lead a lot of the research into APS (Regan in particular).

  • Hello - I see you have just joined our community. Do you have Hughes Syndrome? I was also wondering why you would suggest Mr RajRaj and Lesley Regan for a patient with cerebral APS as they are both obstetricians! - albeit ones we know well.

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