Sticky Blood-Hughes Syndrome Support
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Hi All,

Just wondered if anyone can help i have my first Rheumy appointment end of Feb i was diagnosed with APS 2004 but feel i have been left in the system with no support from Haematology / Gp. I have recently read up on my illness and feel alot like symptoms i have been experiencing is down to APS / Lupus / Fibro and it has really opened my eyes and thought i am no longer going to sit back and accept it.

just wondered what to expect from my appointment and if anyone can give me some tips what to get out it ? also such i discuss my symptoms that are not related to my joints with my Rhemy ?

Thanks any advice will be gratefully received

8 Replies

Hi sit down and write all of your symptoms and how far back you can go to when you first felt something was not right. When i saw professor Hughes in 2005. He asked all about my history. ie, did you have migraines in your teens and how often. Have you any drug allergies? I do have and that was what triggered my first episode in 1977, then in 2003. Since then my conditions have never improved. You have not mention where you are seeing your consultant. I go to St Thomas's in London, but i live in East Yorkshire. Hope this is helpful. Bernie


hi revamp-i first saw my rheumy in nov 2011 ,i was dia. aps in 2009 august, i continualy had migraines-vision problems- virtago- muscle spasums, hip knees and feet pain. reg dcs said dont worry!?!>rheumy ran 29 blood tests -protein s and c deficiencys, la ,hyperlipidemia,elevated anti-cardiolipin igg and igm ,osteoarthritis, and avn. they have never been able to stabilize my inr - its all over the place, was on warfarin - he put me on hydroxychloriquine as to aid for clotting- im waiting on emg/nvs and then a avascular study,, seeing him was great. having your info ready is a must! bernie is 100% rite on that. i have never been seen by a haemotologist - though he has made mention of it, let us know how you do > ---------- jet



I wrote a condensed version otherwise It would have been a Novel good luck sweetie x


Hi Revamp

My first question is where is your Rhumey appointment, I would also say you need to go in on the first instance that they there to help going on the attack will not help but being infomed will. Take a time line of your medical history as if you were explaining it to a novice also take a list of your symptomns and a list of the medication you have taken also write a family history of any clost, PE, stoke events in the family as this helps with diagnosis. If you are not going to a rheumey at say St Thoms etc i would also print out about the APS, Lups and Fibro so at least you can say you have been through the mill aready and this fits that way the doc can either say yep know about this or say he will need to look and get back to you. Be prepared that if they they need to do the basics and then call you back for another appointmnet to deal with your issues.

You may find you get referred to a Heamo depends on the doc and hospital but take all the info i have suggested. Also a lot of docs if you have not had a clotting event in the past they are not as worried as those that have due to the fact you would of been put on anticoagulants to stop clotting events.

I am happy to help with info where i can



Hi All

thanks so much for you quick response. i was diagnosed with APS after multiple DVT / PEs in 2004 when i was admitted to A&E after my thigh swelled with a massive bruise and was admitted for 3 long months i suffered extensive venous thromboembolism and thrombocytopenia then haemorrhage with massive haematoma of the thigh and have developed post phlebetic syndrome and risk of Ischaemia. I manage my INR at a different hospital than my Haematology and they can not access my records. My INR is stable most of the time but can be affected with stress and am on Sinthrome which i believe is quiet harder to manage. I will get my health knowledge together for my appointment i wasnt sure if they just saw you for Joints / pain etc but as we all know that Proffessor Hughes is a Rhemy. I am base in Manchester, when i was first diagnosed there was talk that Prof. Hughes wanted to meet me and it never happened but i am going to my local Hospital to see my Rhemy, but feel that an appointment at St Thomas or with Prof. Hughes would be benifical to me and my health. My consultant at the time of diagnosis was fantastic but he has sinced moved hospital and my support / care has gone under the radar.

Thank you for your advise all :) Paddy do you know of any leaflets / information about APS available for doctors surgeries and people awareness and how to get refered to St Thomas / Prof. Hughes


Ok Revamp,

Regarding going under the radar this is a normal issue for local hospitals, take all the info i have suggested and see what the doc says if they are knowledgeable you will get referrals for other areas. Regarding prof hughes he is now doing private work at i think it is at London Bridge he no longer does NHS work but the clinic he set up is at St Thomas Louise Coote Lupus Unit ask your GP for a refferal if not ask the Rheumy your seeing for a refferal to St Thomas. Regarding info. Depends what you want if you want reaserch etc yep can send that if its leaflets and general infor message me your email address and i will email some things to you. You can aslo contact Kate atHSF as well for info Sheena left you the link below.



Hi hon

As others have said a full list of symptoms (everything however trivial you think it is), a list of events/ medical history, allergies, migraines, childhood illnesses (glandular fever) etc. I took a letter explaining how it affected my life and a list of questions cos i knew ide forget.

Gp or rheumy could refer you to st thomas's or i believe you can book to see prof Hughes privately at London bridge.

Take a look at the Hughes syndrome foundation site at, if you not done already, is a great source of information.

I hope your appointment goes well.

Take care gentle hugs love sheena xxxxxxx :-) :-) :-)


thanks again for your help and advice i have noted down all your suggestions and will print some things from hughes-syndrome as you mentioned. Paddy i will message you now with my details thanks again will let you all know how i get on :) :) its great to know there is support out there xx


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