New Member with APS - Seeking Advice

[JPMcGee75]

Back in 2012 I had a bad DVT in lower left leg and thigh and following further blood tests I was diagnosed as having APS and put on Warfarin 'for life' with a target INR range 2 - 3 . This is reviewed regularly by the hospital clinic and Hematology Consultant who manage it to the lower end of this scale with my test last week being 1.8. Even at this level I was not told to increase my Warfarin of which the daily dose is currently at 6.5mg.

For the last year or so I've been feeling really rough with fatigue, muzzy heads, memory problems, pins and needles, numbness in fingers and toes, cramps and mood swings. My left leg, the one that had the DVT has deteriorated since the event, having developed significant Phlebitis and I have regular bouts of Cellulitis. I now have a slight limp and walking any distance is a challenge. In April of this year I was hospitalised as an emergency admission, and once again in May, with chest pains and breathing problems but despite cardiac tests and lung tests nothing of significance was found.

Although I have raised the above and my concerns with my GP and Consultants little importance is attached as long as my INR is within target apart for the prescribing of antibiotics for the infections. I have asked if my APS has anything to do with it and have been assured that it does not. I find it so frustrating in that I feel that I'm not being listened to and being placated in that I have to learn to live with it . This does not reassure as I have also advised that my first cousin, a year older than I, had his left leg amputated due to a blood clot a few years back.

Having found the Hughes forum and read many of the posts it was in some way a sort of relief that others have had or are having similar experiences, but where do I go from here.

I would welcome any advice

Derek

Male - 59 years old

[MaryF Administrator]

Hi Derek, welcome, you have arrived in the right place, where are you located? It is a struggle at time to convince the consultant/GP of the higher INR setting required for some people. Please familiarise yourself with our charity website: hughes-syndrome.org/ Also on our forum and on that charity page is the list of recommended UK specialists. Some of us in desperation especially if they are not being listened to, take a trip to London Bridge, taking our NHS blood test results with them, although of course many do get a good result on the NHS. It is crucial that your specialists understands the condition in it's entirety and helps you reach the best balance with your medication, lots of other people are in the same position as you are.

MaryF

[Lure2 in reply to MaryF]

I agree with what Mary has told you. She knows exactly what ot do and that is important!

I live in Sweden and have APS also and we are many on this site that have been trying to get the right treatment from the right doctor. So very few doctors know about this illness!

You have got a diagnose. That is very good. Some of us here are struggling to get a diagnose and some of us are also sero-negative and an APS-doctor can then look at the symptoms and put you on the diagnose and the right treatment, which is usually to thin the blood.

There are books available for sale on Hughes Syndrome Foundation charity website. I prefer (I have it in pocket) "Sticky Blood Explained" by Kay Thackray. She has got APS herself and writes of the different symptoms. It is very good to learn what it is all about with APS.

Best wishes from Kerstin in Stockholm

[Lure2]

I forgot to tell you that I am also on warfarin with a target of 3.0 - 3.5. in INR. Most of us here must be at an INR over 3.0 and many find they are feeling good at 3.5 (like myself). Many of us are also higher than 3.5.

Try to get an APS-doctor ( in your area if possible) and perhaps a selftesting unit. I selftest every second day to keep in range.

Kerstin

[JPMcGee75 in reply to Lure2]

Many thanks Mary and Kerstin and you're advice is appreciated.

I've already joined the Hughes Syndrome Charity and Kate Hindle has been in touch and is sending me more information and the latest newsletter has arrived in my inbox today . I've also purchased Kay Thackeray's "Sticky Blood Explained" and read it from cover to cover over the weekend. This is what prompted me to initiate this post.

I'm now contacting the hospital to get my blood results and letters that confirmed my APS and will then make an appointment with my GP to arrange a referral to the nearest APS specialist and in this respect would welcome any suggestions if anyone knows a specialist in my area . For information I live in South West Wales (Carmarthenshire), just follow the M4 all the way down to its end at Jct 49 and I'm two miles away, midway between Swansea and Carmarthen.

I'm also going to start increasing my Warfarin quietly in conjunction with my weekly tests at the hospital using a slowly slowly approach. I'm also looking to getting my own meter.

Again many thanks for the responses and advice provided.

Regards

Derek

[rach1081985]

Hi I live in Newport south Wales who's managing ur aps consultant I mean please

[rach1081985]

My old consultant is dr sarah lewis she is based in royal gwent and neville hall n special interest in thrombotic disorders n clued up on aps hope this helps message me for more info

[JPMcGee75 in reply to rach1081985]

Thanks Rachel

I see a Hematology consultant in Glangwili General Hospital in Carmarthen, who manages my warfarin but I'm about to be discharged back to GP as warfarin levels are managed within target. Down here no one has an APS interest.

Derek

[kcutter]

I live in the US and have APS. I'm the only patient my doctor has ever seen with it. I have pretty severe symptoms of it as well. My question is, have you been tested for anemia? My symptoms kept getting worse and worse and my INR range was fine (2.5-3.0). They tested numerous things and found I was anemic as well. That makes ALL symptoms of APS much worse. I have since started taking high dose iron and have noticed an improvement. I'm not 100% by any means. I'm not sure I ever will be. But anemia can really exacerbate the cardiac, breathing, memory, fatigue that is already associated with APS. I really wish you the best! In the US, so few know about APS that it is nearly impossible to get decent treatment. I wish I could travel to see Dr. Hughes!!

[JPMcGee75]

Thanks for sharing this and I will certainly mention it on my next consultation, like others I find it difficult to get to talk to a doctor that has an understanding of APS and its associated symptoms.

I hope everything works out for you at your end and my best wishes go with you.

Derek

[JPMcGee75]

Thanks for sharing this and I will certainly mention it on my next consultation, like others I find it difficult to get to talk to a doctor that has an understanding of APS and its associated symptoms.

I hope everything works out for you at your end and my best wishes go with you.

Derek

[JPMcGee75]

Thanks for sharing this and I will certainly mention it on my next consultation, like others I find it difficult to get to talk to a doctor that has an understanding of APS and its associated symptoms.

I hope everything works out for you at your end and my best wishes go with you.

Derek

[GinaD]

Many of us have seen a significant reduction of symptoms with a gluten free diet.