Triple Positive - Way Forward

[Andyfx64]

Hi,

About 4 years ago after years of all sorts of issues such a regular headaches, visual migraines, joint & muscle pain, stomach, memory issues, fatigue, pain Etc, a consultant that I saw (privately) suggested I was tested for antiphosphilid antibodies. I was what is know as ' triple positive' as well as a weak ANA. All tests done over next couple of years were the same.

I was put on 75mg of aspirin and a course of hydroxyquine. The aspirin has really helped with the headaches and I'd say I get 80% less headaches now. Still have most of the the other symptoms.

The private consultant finally diagnosed me with CTD, in the absence of having any known blood clot. I was referred back to the NHS as the consultant said I'd need at least 6 monthly checks as I have a higher risk of having a blood clots, being triple positive and a mother has also had a few blood clots and a father with a few TIA's

I had to wait 9 months to get my first NHS appointment with the rheumatologist. After two appointments (one in person, one on phone) I'm now being discharged back to my GP. I haven't had any blood tests since March 21.

Is this correct? My GP doesn't seem to have much knowledge about APS at all. I feel they are just trying to get me off their 'books' and go away. What sort of care (if any?) should I expect?

Thanks in advance.

Andy.

[Andyfx64]

Oh and I'm a 58 year old male. The antiphospholipid antibodies were 'high titre'

[MaryF Administrator in reply to Andyfx64]

You need your GP to refer you to a specialist who has full working knowledge of Hughes Syndrome/APS, not only will it help you, but also them as a GP to look after you. MaryF

[Star13]

Just like your GP knows very little about APS so do quite a few Rheumatologists unfortunately! You need to ask your GP to refer you to one of the centres who deal with APS patients on a daily basis as they will understand the importance of monitoring a triple positive person with high titres. If you give us a rough idea where you are located we can suggest a few places.

In London UCLH accept referrals where as Guys and St Thomas are one of those chucking patients out. UCLH have some of the top Rheumatologists as well as Heamotologist who understand the condition well.

The other option open to you is to get your private Doctor to refer you to another hospital where he knows you will be looked after.

[Andyfx64 in reply to Star13]

Thanks for your reply. I live in Ipswich, so an hour or so from London on train.

I have organised one more meeting with my rheumatologist to try and explain that being triple positive I should have on-going checks, not being discharged - This is correct isn't it?

[Star13 in reply to Andyfx64]

You should be being monitored. What are they wanting you to do go away and wait for you to have a blood clot?!! It’s possible that aspirin isn’t enough and you may require something like warfarin, however that sort of decision must come from an experienced APS specialist who is seeing people with the condition all the time. If Ipswich isn’t up to that and as far as I know there are no centres of excellence there, you would be better going to London if you are willing to travel. Prof Hannah Cohen is the Haematologist I’d recommend there.

[Andyfx64 in reply to Star13]

Thank you so much.

[HollyHeski Administrator in reply to Andyfx64]

Hi, that sounds like a good plan, yes being g triple positive means you should be monitired and maybe need anticogeration, aspirin is an anti platelets and may not be enough.I live in Devon and travel to London, sometimes traveling to a specialist is our only way of seeing an APS specialist.

You have good recommendations below, I can also suggest Prof D'Cruz at London Bridge but he is private.

Maybe your rhemeatogolist can refer direct but I suspect the referral will have to come from your GP.

[Andyfx64 in reply to HollyHeski]

Thanks Holly. It was actually Prof D'Cruz who helped with my diagnosis, however I can't use private for ongoing care.

[HollyHeski Administrator in reply to Andyfx64]

I would write to Prof D'Cruz and explain all that is going on, including your symptoms and lack of support. Explain you can no longer go private and ask him to refer you to one of his team under the NHS.

[KellyInTexas Administrator in reply to HollyHeski]

this would be exactly my advice as well. ( welcome to the forum! )

Sorry I’m late coming on- I’ve had a new blood clot - s found on scan Sept 3 , so on Saturday. I’ve been very under the weather. I’m one of those who clots like a woman possessed with relatively low- medium titers.

APS is a multi layers story and a very evolving one involving inflammation.

[AJP_100]

Hi I too live in Ipswich and was diagnosed in 1995 in London with APS after a complicated history unfortunately it seems this area there is a lack of specialists I saw Dr Watts privately after a flare as no one really had an insight to what was going on I would suggest going to London its so frustrating and worrying also have you tired the on line chat for the APS foundation as they may also be able to direct you to specialists in our area as well best wishes hope you get the treatments you require soon

[Andyfx64 in reply to AJP_100]

Thank you. I think I'll try and get referred to a London specialist. As you say, there doesn't seem to be a specialist in Ipswich who has experience of APS.

[Krennen15]

Unfortunately you are discovering that APS is in effect a "forgotten condition". I had an unprovoked & undiscovered clot that developed into a near fatal PE about 15 years ago now (in my 40's & fairly fit at the time). Turned out I was triple positive and may have explained why a previous girlfriend had complained that I was always "tired all the time". Ended up anticoagulated for life on Warfarin, have been "monitored" at St Thomas Hospital but they just ask "how you are?" and if the answer is not so good there isn't really a lot they can offer so TBH that's been a big waste of time & if a long trip I wouldn't bother. Really the only ongoing support is my 10 weekly anti coag blood tests....and keep taking the Warfarin which unlike type 2 diabetic meds if you work you will have to keep paying for. I suspect that with "long covid" APS is now even further down the priority list. Sorry I'm not trying to down you out but just relating my experiences. Be vigilant for signs of clotting and see a doc if you are concerned but try not to get too paranoid as it may never happen. It's a really subtle condition that's hard to pin down. Good luck! Mike

[Andyfx64 in reply to Krennen15]

Thanks for your reply Mike - I really suffer from the fatigue as well. It just comes out of nowhere.

In a way I was so glad when I was found to be triple positive as I just felt Dr's and friends thought I was being a hypochondriac with all the ailments I complained about! I've recently been diagnosed with heart disease now with possible ulceration in one of my arteries (CT angiogram) and I'm sure it must be connected but no-one seems to link it and the heart dept are doing no further tests. All so frustrating,

[Lure2]

Hi,

I am triple positive with very high titres all the time since 2002. I live in Sweden and I am on Warfarin since 2012. Warfarin has been my lifesaver. I have a Rheumatologist and a Hematologist and I need an INR between 3.5 - 4.0 and if I am lower than 3.5 one day I take a shot of Fragmin to avoid a clots or something.

I selftest very often and that has helped me to live with my APS.

You probably need Warfarin and a rather high INR like me to feel good again.

To get that you need a Specialist of autoimmun illnesses like APS, SLE, Sjögrens, RA etc etc who knows we have too thick blood and do not often bleed but clot a lot.

Good Luck

[Andyfx64 in reply to Lure2]

Thank you. Can I ask if you've had a blood clot or did you get the treatment for being triple positive?

[Lure2]

I had a lot of neurological symptoms. I fell and could not reach out my arms to avoid hit my face a bit. Dizziness and felt I was falling to the left and had to grab a tree. Memory disturbances like I could not for some minute remember if my parents were dead etc. Ear embolies in the inner ear and Amaouroses fugax (a sort of TIA in the eye) in my right eye. I was in hospital for some days but they could not find anything. I have had a lot of microembolies like many of us have and now the Specialists know about that. It can be very difficult to find them on a Scan though. I had also exstremely high bloodpressure.

Today I have Pulmonary Hypertension and leaking heartvalves and I am 78 now but with my Warfarin and selftesting I am doing fine. Very good Specialists also!

Read "Sticky blood explained" by Kay Thackray. She has APS herself and it is a very good book to understand this tricky illness better even good for relatives.

It can be important for us to understand APS to be able to help ourselves as it is a FIGHT to get a correct diagnose, treatment and the most important thing; a knowledable Specialist!

Most important for me to keep the INR in range all the time to avoid thick blood.

[MLNC]

Don't go to Rheumatology at Guys, they have just discharged me with no anti-coagulation with almost exactly the same history. Despite being triple positive, outsdie of pregnancy, and experiencing neurological issues, I am considered obstetric APS only and therefore need nothing. When I pushed my Rheumatologist on why no anti-coagulation, she eventually said it was the haematologists decision and it is not based on how a patient feels. Sadly, my experience is functionality is irrelevant. Good luck, hopefully knowing where to avoid helps.

[Andyfx64 in reply to MLNC]

it’s frustrating isn’t it. We have all the same symptoms and issues as those those with diagnosed APS but they’re waiting for us to have a potentially fatal blood clot or TIA before they’ll start treating us. Crazy.

[MLNC in reply to Andyfx64]

I honestly feel bereft and foolish. It was the team at Guys that placed me on medication and now after all this time they are setting me free. I would steer clear of the department, and perhaps ask to see a Neurologist (I have found them more receptive) or Rheumatology elsewhere.