Sticky Blood-Hughes Syndrome Support
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First visit to guys under Dr k Breen , what to expect

Hi guys

Well Tuesday is my first appointment at guys under Karen Breen 9am appointment so have an early start .

Slightly worried as to what to expect .

Had the diagnosis of hughes seven years ago re entry things have got much worse , no short term memory saw neuro ophthalmologist Tuesday last week and was diagnosed with anterior ischemic optic neuropathy which has left me pArtially sighted , I have developed acute hearing loss and tinnitus , severe memory issues and balance issues , twitching and extreme fatigue amongst a list as long as my arm.

To top it all of Saturday night my girlfriend found me unconscious on the living room floor with right sided weakness and a bleeding nose and smashed face which is now a fetching shade of purple .

To say I'm scared is an understatement I'm 31 but feel. 101 hughes is now severely affecting my life in every way . I feel if I don't get help soon I am heading towards a big event as I feel so uneasy and not with it

So I have heard some bad reviews of dr Breen , but what am I to expect on Tuesday ? Considering g I'm just on warfarin am I liky to e started on other meds ? How long will my appointment take ? Any Info wil be great

Thankyou a very nervous dan

15 Replies

Hi Dan

Sorry to hear about your episode at the weekend, hope you are feeling brighter.

Don't be nervous (easier said than done, i know!). You already have your diagnosis from some years back, do you have any recent bloods to support? Dr will take a full history from you and probably take another full set of bloods as its your first visit. She may order further tests but that's probably the starting point.

We are all rooting for you but if your g/f can be there with you for support, you may find this helps.

Lissy :)


I found her really easy to talk to, very different to my first visit when I saw someone else. She will listen to you. Sorry to hear about your recent episode. Make sure you take a list of all your symptoms for her.

Good luck tomorrow but there is no need to worry.


Hi there, good luck with this, dig out what you can to take with you, and write your history in short bullet points, leaving nothing out, it will help you and yourself at the appointment, and you will not leave thinking... I wish I had mentioned that ect! Let us know how it goes, she is very good. Mary F x


Morning Dan,

I too am under Dr Breen and find her fine. Make sure you take a written list of questions as not to forget. She does not rush you out the door, like some. Good luck and try and keep your chin up. A lot easier said than done I know. Take care :-)


Hi Dan, I saw Dr Breen for the first time in November {I had previously been seen at St Tommies under Prof Hunt} Following a PE after surgery {diagnosed at local hospital) she rang me at home and brought forward my appointment which should have been in December. She was really lovely and the appointment wasn't rushed she took her time with me and allowed me the indulgence of going through my medical history with her as when I first attended the Haemotasis Centre (approx 2 years ago) I didnt know what I was there for and had. had no guidance or explanation from my GP when I asked him. She seemed upset by the fact that I had developed a PE whilst under their care but in truth they really couldnt have been more thorough I guess I am just not bog standard textbook. Sorry for the waffle but you will be fine I am sure, she is really easy to talk to. All the best Alison x



I can only echo the sentiments of the others when it comes to Karen Breen.I have seen her at both St.T's and Guys and have found her patient, calm and very prepared to listen and offer her helpful thoughts.Ostensibly the appointment is probably for thirty minutes but when I asked as to how long I had she said,"as long as you need".

Take your bullet points and ask away.



I saw Dr Breen once, in my opinion she was great, gave me lots of time and very knowledgeable. Kind, but not patronising. And I have seen Dr's that I can't stand because they are either ignorant or rude or both. But I was happy with her. I've not read any of other's experiences, but from my own, and I am wary of Dr's, she was great. Good luck with your appointment xxx


Hello Dann

I am newly diagnosed with Hughes (and new to this forum). My diagnosis followed a stroke last June. I have now seen Dr Breen twice since January and I have found her to be really patient, easy to talk to and she has put a lot of my concerns to rest. She spent a long time with me at my first appointment, explains things clearly and you receive a written report back very quickly. In fact all the staff at the clinic are really nice and put you at ease. I felt very reassured by my visit to Guys as none of the medical professionals where I live seem to know much about it - Im sure you will be too.

I am seeing my local GP today about starting Warfarin - terrified about that - but at least I'm seeing Dr Breen again in a month.

Wish you all the best,



Hello Sue and welcome to this forum Im glad you have found us. Sorry to hear you too have had a stroke which led to your dx, its a difficult pill to swallow but at least now you have answers and can be more reassured about your treatment - for us that is half the battle.

Dont be worried about starting warfarin, its confusing to start with but you will soon settle into the routine. There is always somebody on here to answer your questions no matter how trivial so dont be worried about asking. x


Thanks for your re-assuring words. I have to admit I've been absolutely dreading it, and was thinking about not taking it, as I have two horses, which are my life, and have been told that I shouldn't ride anymore. However, after much reflection, Im still not that old (well, early 40s), my two ponies are very stocky and sensible and I can take extra safety precautions like a top of the range hat. Life's still for living, but I appeciate I may have to make a few adaptions.

On the plus side, dr Breen has suggested that the warfarin might help my fuzzy head, which would be a huge relief, so trying to be positive.



I sent you a comment or two but they do not seem to have gone.To reprise ,I was put on clexane following a dvt in November 2011 and was told to be careful about cycling and playing tennis.Nothing untoward happened prior to me suffering a weird overnight arrival of fatigue that has kept me off the bike/tennis court since.I was put onwarfarin in August 2012 but still cannot return to my previous activities.Whilst clexane is not warfarin they are both anticoagulants of course and if I was up to it I would return to sporting life.It is a personal decision but I would certainly recommend that you carry on riding whilst you can-just don't blame me if you fall off!


Hi Dan - Please dont be worried about going to Guys. I think some of the previous comments may have been around seronegative diagnosis and you have already had a firm APS dx plus other connected conditions so Im sure she is going to give you her utmost attention and help you.

Im so sorry that you have been having such a difficult time recently but hopefully after this visit you will feel more reassured. Please let us know how you get on. Good Luck x


Hi Dan,

I see Dr Breen at Guys, I find her to be very thorough & easy to talk too.

She will go through your history & meds & will do more bloods, her warfarin nurse will talk about your INR & may change your INR range if needed.

I think my appointments are around 30 -45 mins.

She also has phoned me at home a couple of times just to see how I am getting on.

Please don't be scared. I hope you have a positive result with her & her nurse, their very caring.

Good luck


Hi guys

Firstly thankyou for your comments and answers to my question they put my mind at rest and it helped me so much so thankyou again .

So the visit , spent nearly an hour with Dr Breen and it felt great to have someone who actually understands fully to talk to .

As expected plenty of bloods were taken , full history etc . INR. Target range increased and started on hydroxychloroquine , I have to see a neurologist at guys who deals with hughes patients to rule out a demylinating disorder completely I have to have a 24hr portable heart recording after my recent collapse , a VQ SPECT scan , spine scan , and a few other imaging studies and I return in three weeks to see her again .

All in all a positive experience I feel I have someone who can help me

Once again thankyou for your help



Brilliant - love to read good news :-D keep us informed x


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