Hi all.. I'm Jo (female) 37 I was Diognoised with (APS)Hughes syndrome three days ago! I've had two heart attacks and docs confirmed....

[Jomack]

That APS was the cause! Can you all help me with what type of life/future I'm going to have now I have this condition?

[MaryF Administrator]

Hi and welcome, this is the right place for information. Firstly where are you located? Secondly, please familiarize yourself with all the information on the Hughes Syndrome Foundation charity website: hughes-syndrome.org/ The website also contains a list of specialists to be referred to if in the UK. It is better to have the diagnosis than not to have it picked up, as now with the right specialists your medications will be tailored to your own individual needs and requirements to prevent future episodes. Many on here have had similar to yourself and lead full lives etc. Please feel free to ask questions. MaryF

[Jomack]

Thank you for the reply MaryF. I live in uk (Kent) I will have a good read of the site. Thanks again. Jo :0)

[MaryF Administrator in reply to Jomack]

Hi it is crucial that your GP refers you to the nearest specialists or one you can reach! hughes-syndrome.org/self-he...

MaryF

[Lure2]

Are you on any anticoagulation drug? If so what therapeutic range are you on? It is said that those with a heartattack need a more aggressive and precise anitcoagulation. That means a higher therapeutic range than 2.0 - 3.0 (if you are on warfarin).

You can as Mary has informed you about, read on the Charity web site. There you can also find some very good and informative books about APS.I prefer "sticky Blood Explained" by Kay Thackray .She did get a heartattack!

We use to say that there are two things that are important. The first and most important thing is to get a diagnose. That you have now. The second it to find an APS-doctor. That means a doctor that knows exactly what APS is and who understands the many symptoms you talk about. An APS-specialist. There are not so many so you must try to find someone in your aria perhaps.

I am 70 and have APS and I am on warfarin since 3 years back. I would say I live a normal life and I have leaking heart valves and pulmonell hypertension. For me warfarin has saved my Life. You can be lucky that you have got a diagnose. APS is not so bad if it is treated well and in good time.

Best wishes from Kerstin who lives in Stockholm, Sweden

[Jomack in reply to Lure2]

Thank you Lure2, for responding... I'm on aspirin and colplidagril because I also have AF (AFib) and since having my heart attacks.. But as of three days ago I've been having injections into my tummy. I'm waiting on an app with a haematologist as we speak, who may put me on warfarin? They didn't want to put me on it at 37 but now I have APS they prob will! As long as I don't have the injections for too long! What side effects do you get from warfarin? Thanks again... Jo :0)

[loretta1106 in reply to Lure2]

Good morning Kerstin. I also have Aortic Insufficiency which is really a leaky heart valve-discovered 3 years ago before APS dx. Now I'm pretty positive that it's all related to my APS.

[Lure2 in reply to loretta1106]

As you know Loretta I am not a doctor. These are difficult things. I have tricuspid- pulmonary- and mitralvalves leaking and pulmonary hypertension but NO breathlessness. My heart is working fine but it is in rest the problem is. Have diastolic dysfunction. How much is difficult to say without going in to the heart.

Heart-valve problems go with APS like also pulmonell hypertension and sometimes very high bloodpressure.

As we are both climbing stairs at an age over 65 both of us, just for the joy of it, we can be lucky..I hope you have been examined by your APS-doctor for this.

Stay healthy Loretta. Keep in range. Kerstin

[loretta1106 in reply to Lure2]

I have an appointment with my cardiologist tomorrow Kerstin. Luckily I don't have hypertension so I am happy to hear you are having a normal life. It helps give me a positive outlook as I begin this journey.

[Lure2 in reply to loretta1106]

Hope indeed your cardiologist understands APS!!! Do you have an APS-doctor now?

Kerstin

[Lure2]

Hi, I understand that you have a lot of questions in your head! They have not yet decided which anticoagulation drug you will have.

But I suggest you do as MaryF has adviced you already. That is to FIGHT to get the APS specialist you absolutely need now!!! Most of us have had to fight to get that doctor.

Warfarin, as far as I now, have no sideeffects but the big problem is to keep in range. If you are too high in INR it is the risk of a bleeding and if you are too low (which is much more usual for us) that can mean a new clot. If you are prescribed warfarin you will probably be on the therapeutic range of 3.0 - 4.0. I am not a doctor so I do not know for sure but as I wrote above if you get a specialist of APS he would certainly know.

If you read the book I told you about you will learn. I have it in pocket.

Do not worry. Get an APS-doctor and a lot of information of this illness! You have a diagnose now!

I wish you good luck!

Kerstin

[Manofmendip]

H Jo.

My colleagues have asked you all the right questions and have given you good advice too.

Are you injecting Heparin (Fragmin or Clexane)?

Do please make sure you are referred to an APS specialist consultant, as my colleagues have already advised you to do.

With the right medication many of us on here can lead relatively normal, active lives.

Please keep in touch and let us know how you are getting on.

Dave

[GinaD]

Warfarin has no side effects. The drug has been in use for decades now and so far there are still no shady side effects other then the intended consequences of taking warfarin; which is a reduction in Vitamin K metabolization.

That said ; though popping a pill or 2every day may seem less invasive then those daily belly shots, warfarin does come with a host of dietary issues that those belly shots do not bring with them. But I too credit warfarin with saving my life and I have gratefully memorized all the food dos and donts and have faithfully and greatfully submitted to those venous blood draws.

Suggestion: if you go with warfarin and the venous blood draws,( as opposed to the finger stick checks, which do not always accurately measure Hughies' blood INR,) then try to confine those draws to one specified arm -- thus saving the other arm for old age.

[Dee121]

Hi Jo. I was diagnosed with APS 8 years ago age 30. I felt fine after starting life long wafarin treatment and have lived a normal healthy and active life until recently. I have started experiencing a few perhaps nuerological problems and difficulty in pregnancy. But I'm hopeful that I will get answers after seeing an APS specialist, and I agree with Kirsten on the importance of getting specialist advice. Not all doctors and heamatologist have up too date working knowledge on the condition. But since joining this site I have learnt so much and the advice from other members has been spot on. I would recommend reading through past questions and posts on the site to gain further insight and possible answers to the many question u may have. Best wishes Diane

[Jomack in reply to Dee121]

Thank you Dee121... So we're the same age? How is your pregnancy going? I looked on the list on Hughes syndrome website and there are a number of them listed on there in Canterbury and that's where I've been refured too so that's reassuring. If I'm not happy with who I'm put with I will speak up dont you worry! So warfarin no side? Do you have any other conditions? How did you find out you had it? Jo :0) x

[Dee121 in reply to Jomack]

Hi Jo, very late in replying I know lol. No I'm not pregnant now and that might be a good think right now as symptoms are bothering at the moment. No other major diagnosed conditions just symptoms directly related to APS. I didn't have symptoms until recently I've been fine with no side affects from warfarin at all. I had chest pain went to a&e and was told it was clots in the lungs so therefore lifelong warfarin it was for me. Hope youve had some useful answers so far.

[Jomack in reply to Dee121]

Hi again Dee121.. Where do live? I'm in south east kent.. How are u getting on with warfarin? What have they set your INR at? 2-3 or 3-4? I've recently possibly had a TIA (mini stroke) so may be started on INR level of 3-4 waiting to see my heamatolagist next week. What symptoms do you get? How do u manage work when they flare up? Jo xx

[Dee121 in reply to Jomack]

Hi Jo, I'm in the North West in Manchester. My INR is like yours between 2-3, and until recently everything was fine no side affects no flares no nothing. This year however I have been experiencing a lot of symptoms from migraines to neurological to pain swelling in my feet. I really just feel like I'm falling to bits ha! I also now have high bp and anaemia. As a result of how I was feeling and advice from members on this site I asked my gp some weeks ago to be referred to an APS specialist. He messed me around for weeks come back then go for senseless blood tests etc and basically did not want to refer me. He even on one occasion mentioned something about it costing my local authority. So by this point I was fuming I contacted the PCT and explained the situation and asked about the complaints procedure. They advised doctor's cannot refuse you a referral unless they based their decision on a clinical reason. I relayed this to the practice manager who resolved the matter immediately. I have since been seen as St Thomas's in London by a lovely lady Dr Cudrado. She explained things through my and made recommendations on my job too. The job includes fitting equipment like bath chair which Dr Cudrado says it not safe, I am now waiting for her report to take to my manager so that reasonable adjustments can be made. I really struggles with work now things I could do easily before are a struggle due to the nuro problems. Dr Cudrado has recommended I try hydroxychloroquine to see if this helps reduce these symptoms. So it's been a long hard struggle so far not sure it will get easier but I'm hopeful.

[krysty]

Hi Jo,

Welcome to the site and I hope you can find the right medication that suits you. I do have to say that most medications come with side effects and you need to be aware of what they are and whether the good outweighs the bad etc. Please do some research, ask lots of questions, as suggested get your referral to an APS specialist and please do not feel bullied into taking a medication that is cheaper to administer for example. I unfortunately . was led to believe my haemotologist was an APS expert and did not question his advice until the second time I saw him and realised he did not have any expert knowledge, he knew about APS but kept telling me to go to my own GP for symptom advice!! the difference in seeing a consultant who understood and could treat APS was massive. So best of luck with it all x