Sticky Blood-Hughes Syndrome Support
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Can APS come and go, like having lupus flair ups?

Between 2005 and 2008 I had multiple PEs, multiple DVTs and multiple TIAs, in fact I've just discovered that the TIAs I had in 2007 were more than just TIAs as the brain MRI showed multiple lesions in multiple lobes.

Between 2009-2011 I was doing much better, no symptoms of DVTs or PEs etc and my overall health was better in general (joint pain less, fatigue less). I was however still suffering with chronic acute anaemic and so my GP at the time suggested coming off warfarin because it was definitely exacerbating my anaemia and I'd already needed to have two blood transfusions in the past five years.

I had an IVC Filter (clot catcher) put into my IVC vein in 2005, so I had the security of knowing that this would catch any life threatening size blood clots, should I start to produce clots again while not taking warfarin. I stopped taking warfarin and continued to be ok for the next couple of years.

Fast forward to 2016 and my health had begun declining again from about 2013. I had become breathless again and very unwell in general however in July 2016 my symptoms became acute, with excessively high heart rates, acute breathlessness, chest pain and symptoms of TIAs again. I was rushed to hospital multiple times and I repeatedly asked the doctors to put me back on anticoagulants, as I knew I was producing clots but because my CT scans were negative for PEs it fell on deaf ears. It wasn't until Dec 2016 when I saw a lovely female respiratory doctor, that I finally got put back on anticoagulants but this time apixaban (between Aug and Sep 2016 I had two raised APTT blood tests) .

Fast forward to the present and I'm about to have my IVC Filter removed, possibly in only 10 days time! It has tilted and the lower metal struts have pierced through the vein and it has also caused multiple problems with blood clots and flow in my legs and abdomen below, so I know it must come out. It is also covered in scar tissue which is preventing the returning blood from getting back to my heart and so could be the cause of my excessively high heart rates and breathlessness.

My biggest concern is that I won't have the security of this clot catching filter anymore and I'm really not convinced that I'm therapeutic on apixaban.

I'm being told that because I came off warfarin for a time and didn't have any major clotting issues, that this must mean I don't have APS and so I'm fine just taking apixaban.

I know from reading all about APS and asking about the blood test results in a recent question I posted on here, that the blood tests results for APS can be positive for several years but then repeatedly test negative, or the other way around, negative then positive. Could it be possible then to have periods of multiple clotting events followed by a period of no clotting, then find yourself having multiple clotting events again a few years later? (like having lupus flair ups)

Thanks so much to everyone who answered my previous question, your responses were so helpful. I know that this filter must come out but I'm so symptomatic at the moment and I'm still having multiple neurological symptoms of TIAs, I just have to be certain that I'm fully protected by apixaban once this filter is removed.

Thanks again, Claire

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What an awful time you seem to be having I do hope the removal of the IVC filter goes well and has not caused to much damage.

Take a look on the pinned posts one of the admins put on a post about........Can we withdraw anticoagulation in patients with antiphospholipid syndrome after seroconvertion.

Maybe you could copy it and take it along to your next appointment and explain your concerns about being left at risk of clotting and further TIA's.

Hope all goes well for you.

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I wish you could consult with a Specialist of autoimmun illnesses who knows this illness from previous patients and knows how we react on bloodthinners and not bloodthinners etc etc.

I wish it could be as soon as possible as you have not have Doctors who have understood our condition as it seems. We have sero-negatives and also micro-clots and micro-emboli with this illness! Good Luck to find that Specialist!

Best wishes from Kerstin in Stockholm

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Hi, as far as I am aware once you have a diagnoses of APS you have it for life, despite the blood tests and yes we can have flare ups from time.

I have periods of 'normalilty' and then for no reason go through months of problems. (Going thru one now)!.

I certaintly would not risk coming off anticoagulants.

Have you asked if you can go back on warfarin? Its still the best anticoagulant and you could find your level INR best suited for you?

Im sure once the filter is out, thats one hurdle out the way for you. Its been your safety net mentally too, so it will take a while for you to trust anything else. Speak of your concerns to your doctor. xx

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Short answer yes! That is the characteristic of this disease and the whole point of having to stay on anticoagulants to prevent future clots. It's a bit like someone who has a heart attack due to high cholesterol bunging up veins. You clear the clot, give statins, but just because the patient is well you don't take them off their meds to "see" if they remain well or their veins get clogged up again!

Apixiban is not a drug that should be being used in your case. Read the RAPS trial under pinned posts. Even the oral anticoagulant trialled is not suitable for you. They should never have taken you off warfarin in the first place as your anemia should have been properly treated and the cause found.

I think you know what you need to do, having the filter out is stressful for you but if I were me the only option then would be a return to warfarin and then see what happens. Good luck with the surgery.

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Well stated, Cindy

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leakeadea You have been given great and clear advice with plenty of detail here. There really does need to be some urgent joined up thinking regarding your current situation. This disease can come an go, blood test wise, and also we do flare along with most other autoimmune diseases. The right medication plan must be worked out for you, with your GP on board also. MaryF

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Thank you all for your responses and advice, if only the doctors I see were as helpful and informative!😕

The trouble is I've never actually been given a diagnosis of APS, despite having so many clinical symptoms and mildly raised APTT result on a few occasions.

I really thought when I got seen by the St Thomas' hospital Thrombosis Team, that they would want to get to the bottom of my very complex medical history and multiple clotting events but I've just been brushed off once again.

I've been anaemic for years with suggestions made towards my having a possible 'Thalassemia trait' or 'anaemia of chronic diseases' (which is linked to inflammation/autoimmune type conditions like lupus and rheumatoid arthritis).

I had tests last year showing inflammation in my colon but not raised enough to be an inflammatory bowel disease and my CRP levels were also raised meaning that I have inflammation going on somewhere in my body, could that not be pointing towards an autoimmune condition?

I have no idea whether the multiple clots I had on my brain have been TIAs caused by clots passing through my PFO (small intermittently opening hole between the atria in my heart), or whether they were caused by micro emboli in my arteries, which might suggest APS.

I have to have my filter removed but I feel very nervous about it being gone, as I will then be completely reliant on my anticoagulation keeping me clot free.

I called the Lupus Centre today where the rheumatologist Professor Hunt is but apparently he's practically retired now. The lady I spoke with told me to email my concerns so I guess that is my next move, unless anyone can suggest any other doctors in the UK who might be willing to look at the bigger picture, rather than making judgments based on one set of blood tests.

Once again thank you all for your advice and support. Claire ☺

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Not happy you feel you have been brushed off by St Thomas - Prof Hunt, is the heamatologist for the thrombosis team, she still has clinics.

I would certainly write your worries down, asking for an urgent appoitment to discuss. Copy your surgeon and GP in. Or if your GP can write, even better - if your happy to return to warfarin after your surgery, I cant see why they would object.

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Hi HollyHeski, unfortunately despite being told what a complex patient I am, I was only seen by a junior doctor, not professor Hughs or Dr Karen Breen.

I read Professor Hughs (the rheumatologist) book last night, the one with all the case studies in and several of then were almost identical to what I've experienced. I am sending him an email with all my medical history and copies of my head MRI attached, as he is so familiar with those patients who test seronegative and I'm hoping he will look at my clinical features and my families relevant health issues too, rather than making a diagnosis based on one set of blood test results.

Fingers crossed he will help me😕

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Hi again,

You live in England (the country of prof Hughes) and I know you have many Specialists there.

I wish you could follow the suggestion from Holly (Administrator). I live in another country (Sweden) with other "rules" how to get in contact with a Specialist. You have already been in contact with St Thomas - and brushed off...!?

Good Luck!

Kerstin in Stockholm

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Hi Lure2,

thanks for your response, I'm having trouble posting but it might be my tablet, the page and what I'm typing keeps freezing up.

I fully expected the thrombosis team at St Thomas hospital to take my clotting history and current symptoms seriously, especially given that my IVC Filter is about to be removed. But all I was told was to keep taking Apixaban and come back in three months. I was really hoping for some support, especially with my filter coming out, plus I live alone and I'm in very poor health in general, so really need some specialist support especially with my clotting issues. Last night I had terribly blurred vision again and as I often don't speak to anyone for the majority of my day, it's impossible to know if I'm having periods of slurred speech again.

Yesterday I sent an email to Professor Hunt the rheumatologist asking for his advice. I just read his book Understanding Highs Syndrome and it sent chills down my back, as so many of the patient stories could have been my story. I'll just have to wait and hope that he helps me.

Thanks again to all who responded.

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I want to wish you Good Luck with the surgery!

I cross my fingers that a medication plan will be administrated shortly as to your further needs.

Kerstin in Stockholm

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