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Sticky Blood-Hughes Syndrome Support
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Diagnosed 18 years ago

Has anyone ever heard of someone being diagnosed with Hughes syndrome but not receiving any treatment whatsoever ?

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Hi it is a bit unusual, but sometimes doctors think it is a temporary thing only attributed to pregnancy which is of course not correct or do not know enough about it to do anything about it, or in some cases have not kept up with their medical training so dismiss it, why do you ask?

MaryF

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I've been told I have it and was put in warfarin for a while and the consultant said she went to a conference and spoke to a London doctor who said I don't need to be on warfarin and told me that the only time it effects me is when I need operations because I'll need blood thinners otherwise they've left me to it, maybe I have a mild form if there's such a thing.

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I am not on Warfarin either but Aspirin, and another drug called LDN which is not an anticoagulant but which suits my wide range of conditions. Have you had any incidents? Clots? etc. I am guessing that you are at least on Aspirin with the diagnosis. If not so, I would question that

I would add that in pregnancy I was really bad clot wise.. then none since but I do suspect TIA's which I did not understand at the time, but better on my two 75 enteric coated baby Aspirin twice a day after meals.

MaryF

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My first child was born by emergency c section at 26 weeks and I had a clot on my lung, I was having tests a while ago for something else and they notice my spleen was enlarged, no idea if that's connected, I've always felt like I have never had enough information, I've asked doctors to assure me it's ok and they said yes, I have a few issues but no idea if they're connected to Hughes x

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You need to be under one of our recommended specialists, as it is clear that you are worried! hughes-syndrome.org/self-he... Some doctors/consultants have half the knowledge regarding the condition but it is more useful to have the entire picture!

MaryF

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I agree with Mary. You should be evaluated by a proper APS specialist and if only they say you don't need to be on warfarin then take their advice. It is known that there are some forms of APS that only seem to affect people during pregnancy, however Im personally sceptical about this because this disease was only discovered in the 80's and those people who have been told this are now not old enough to know YET if this will affect them in older life (50-60's).

I had issues in my 20's with miscarriages and then had spotty issues until my mid 50's when I had a PE and then a stroke. No one knew about APS when I was in my 20's so personally I have to beg to differ and would always er on the safe side.

As to the answer to your question, if you are saying do people go without symptoms for many years then I think the answer is that they can have sublime symptoms which they may put down to other things until something happens and then they get diagnosed with APS. Then they look back and all those niggly things they have had over the years all make sense.

Be your own judge and don't let half baked Doctors with not enough knowledge tell you things that may not be in your best interest. :-D

1 like
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Well said. I do agree!

Kerstin

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This is an interesting thread. I had someone in my group who had been diagnosed with Aps but had not had a clotting incident so did not have warfarin. Nothing to do with pregnancy, she just takes aspirin and is fine. But seeking a specialist is always a good idea.

Blessings Ann

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Hi Tracy and welcome.

I totally agree with what Mary, APsbotFab and Kerstin have advised you. You do need to be seen by an APS experienced consultant.

Where are you from?

Best wishes.

Dave

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I'm from Pembrokeshire x

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Hi Tracy

Here is the link to the page on the HSF website where you can find APS Specialists:

hughes-syndrome.org/self-he...

Please do try to get referred to one of the consultants in Wales.

Best wishes.

Dave

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I was diagnosed in 1999 after 7 miscarriages and went on to have a successful pregnancy due to aspirin and heparin. I have not been prescribed anything since! Maybe I'm being foolish but I don't feel unwell, except for the odd migraine so haven't thought to get more help

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I was diagnosed with APS in 1997 after several miscarriages as well. I had aspirin and heparin during my pregnancy, but haven't been prescribed any medication since then. Every time I see a new GP I ask them their opinion about possible on-going treatment but they all seem to dismiss medication as I haven't had a clotting incident. I've suffered from frequent migraines all my life, though. Not to mention bouts of awful fatigue - ironically a lot better since the menopause! I've recently started taking a low dose aspirin every day and I'm now getting fewer headaches. I am aware that I'm basically winging it though!

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I'm glad I'm not the only one! Might start on the aspirin again and see if it settles the migraines a bit

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I had a single DVT last year at 36 and following 6 months on Warfarin was diagnosed with Hughes. My Haematologist has said I am too young to be on Warfarin for life unless I have another DVT or PE.

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I do not know if you live in England and i wonder if you were diagnosed with all 3 antibodies also?

The number one question is: was the doctor who diagnosed you an Specialist of APS (Huges Syndrome)? .

If he understands APS he should know that we must be well anticoagulated as we all have too thick blood. You have had a DVT and if you also have the antibodies you are qualified to be on warfarin no matter how young or old you are. It is very important with warfarin to prevent furhter clots or DVTs etc etc.

I read "Sticky Blood Explained" by Kay Thackray before I started warfarin. She has APS herself and writes about the different symptoms of this very rare illness. It is a very good book.

Has he suggested som other drug for you if you are going to stop warfarin? Perhps you are planning more babies at the age of 36? There are other drugs also to prevent clots and DVTs. You must not stop warfarin before you have some other drug. APS do not go away.

Best wishes from Kerstin in Stockhom

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I tested positive for Lupus Anticoagulant only as far as I know. I am due to have further tests in June then I plan on obtaining a second opinion to be sure.

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I have APS and all the 3 antibodies in high titres, inkluded Lupus Anticoagulant. I hope you mean Lupus Anticoagulant and not Lupus which is another autoimmun illness often connected with APS.

As I said earlier (I do not know if you live in England) it is most important to have an APS-Specialist who knows what to look for.

As you have told very little about yourself i can only say this.

Good Luck from Kerstin in Stockholm

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It is enough to have only one antibody positive to have a diagnose. Usually they test twice with at least 12 weeks apart. The second bloodtest can be negative but you can all the same have APS.

Some people are sero-negative and are diagnosed only on symptoms typical for APS.

I have always for 13 years been positive here in Stockholm but that is unusual.

If you are on warfarin they may not want to test you for Lupus Anticoagulant as the warfarin can give a false answer.

Kerstin

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newlydiagnosed123 - If you have a Dr who has actually said to you that he is waiting for you to have a clot.....that is a DVT or a PE before he is prepared to treat you with anticoagulation then personally I would find another Dr. Im sorry to be blunt but you can die from a PE and a DVT can travel to your lungs and become a PE no matter how it is caused - not just from APS! This type of thing makes me so cross, especially with a person who has already suffered a clot.

The decision to take warfarin must be yours but a Dr should never refuse to treat you by telling you what he did. Whats he going to tell your family if you have a stroke and your disabilities are so bad that you end up needing care. I know this is blunt however its not your life that they are playing with. You need to find another Dr who will listen to you and know this condition better. If after talking to them and they have evaluated your medical records etc then you can decide between you.If its not right then, thats different.

I hope you find the right Dr for you and can make the right decision - not be dictated to.

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Yes....I was diagnosed in 2001 after 4th miscarriage went o to have 7 In total. Had asprin & heparin then but no treatment at all after 2003 despite DVT in 2006

have been suffering odd symptoms like MS since 2009 getting worse each year but on DVT in Nov 14 & Jan 15 got me in safe hands of prof Martlew. ......and then I found hughes foundation and now I am putting pieces of yhe puzzle together after so much wasted time and feeling lkke hypochondriac for nearly 6 yrs

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I mentioned this in a reply earlier - normal medical practice is for anticoagulants for 6 months following a clot. I was on that routine, with no recourse in between, until the next clots happened.

After my third or fourth clotting incident,I was told the norm would be for lifelong warfarin, but as the clots were a symptom/side effect of the main condition I had and that had been treated, there was no reason to remain on warfarin. A day later, I had another PE,this time bi-lateral. I only knew because I recognised the symptoms from the last one. That was when they tested for APS and in the report letter I found this weekend (we're moving house soon, so sorting through stuff) it mentions that as on wArfarin, couldn't test for lupus antibodies. That meant nothing to me then, it was just a label for the symptoms I was experiencing and meant warfarin forever, as APS couldn't be cured.

My main points:

1. I was told I had acquired APS as a result of several clotting incidents, being unwell for a long period with UC and there was no way of knowing if it had been present earlier. Could they have tested sooner? Was the UC masking APS?

2. It took a clotting incident immediately after (then next day) being told I could stop taking warfarin by my haematologist for the same department to test more thoroughly. could they have checked sooner?

3. For four years, maybe five now, APS has been the fly in my ointment - keeping me on warfarin, meaning regular INR checks, fluctuations every time I'll with something else, or the wrong food eaten or antibiotics prescribed. Only now, when a number of other issues are being investigated, does it seem like knowing more earlier may have helped. But it also may have had me sounding like a hypochondriac!

If you have a concern, ask the GP. If they won't check, ask for a second opinion. If you have been diagnosed, maybe the GP believes (as was once explained to me) that as young, usually fit and in good health, there is only a clotting risk if I'll or immobile for long periods. Whether an APS specialist, or even a regular haematologist would disagree will only be seen if you consult one - your GP and maybe even the haematologist dealing with your case since last clot may not be piecing the risk picture together - it's all about risk.

Sorry, a bit of a ramble, but hope it helps - I'm only 38 and been dealing with clots since 2007, so being young is no defence!

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i agree with you totally...I had my first clot when i was 26 and then 1 DVT and pulmonary embolism at 27 !! so clearly age is not a factor at all...when it strikes...then there is no turning back believing that you are too young..harsh truth !! :(

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I though I was the only one. I put myself on aspirin because the haematologist I was seeing at the time said I could if I wanted to but he didn't think it was necessary as I hadn't had any spontaneous clotting incidents (I had a DVT caused by the pill and 3 miscarriages - 1 at 20 weeks). I feel like a hypochondriac as I'm constantly feeling ill or in pain or both.

I have my first appointment with Dr Karim's team next week. I'm hoping they will have some advice.

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