Is there a dr at Ninewells who deals with APS?

[roony13]

In Dec 2020 I had what was thought to be a TIA. I mentioned to the stroke nurse that I had tested positive before for lupus anticoagulant and my rheumatologist at the time put me on aspirin. I was told to stop HRT in order to do this. It wasn’t checked again. The stroke nurse prescribed Clopidogrel and Avorastatin and she organised the first blood test for LA which was positive and a dr ordered the second one 12 weeks later which was also positive. The second one was in April 2021. By this time the thinking is I had had a migraine not a TIA but was kept on these 2 medications because of the positive blood tests. I have not spoken to my rheumatologist or the stroke dr since Aug/Sep 2021 because of the covid backlog. Out of the blue a letter arrived from rheumatologist to say I could probably stop the medications and he copied the letter to the stroke dr, who contacted my GP to tell me to stop them. This happened yesterday. I have auto immune disease, dermatomyositis with anti Synthetase syndrome and also urticarial vascultis. I am at a loss as to what to do. I would have expected as a minimum to have had the blood tests repeated. I’m speaking to my GP on Friday about this as he informed me by text. Any advice about my situation would be much appreciated. I live in the Tayside area. Thank you. 🙏

[MaryF Administrator]

In view of your positive tests it would be good if your GP could refer you to the nearest Hughes Syndrome/APS specialist, it would not only help you but also them with your care. Do be firm and say you feel that you need the right specialist, here is one: Dr Colin Baines

Consultant Rheumatologist

Medicine and Cardiovascular Group

Ninewells Hospital and Medical School

Dundee, Scotland DD1 9SY

Telephone: [phone]

MaryF

[roony13 in reply to MaryF]

Thank you Mary.

[Lucky67]

Seconding Dr Colin Baines. I have never met him but he was recommended to me by another doctor who I trusted.

I have a bit of a complicated/messy history -lost notes, misdiagnosis etc. 30 yrs ago, in my early 20s over a 6 months period I had what in retrospect was likely to have been a small DVT in my left leg, a probable PE and then a confirmed massive DVT in the other leg. I had at least one positive test and was diagnosed as having APS at St Thomas' Hospital. Wasn't tested again for a good few years and have never tested positive since - came off warfarin onto aspirin and now on no blood thinners for a number of years . Although for high risk things - flying, during pregnancy etc I am treated as though I am positive (fragmin injections, etc ). If nothing else I must have a propensity to clot.

Have lived in Scotland for over 20yrs now and Ninewells is my local hospital. I have had several dealings with them over the years, not all positive. However ...

I did see a fantastic haematologist there during my second pregnancy when my consultant was querying the need for the injections after my negative tests. He got (actually tracked down) all my notes and confirmed that I should be treated as having APS during pregnancy and need to continue to be vigilant for possible clots. (He was also the first dr who admitted to me that my 'pneumonia' was on balance most likely to have been a misdiagnosis and actually a PE.) Sadly I later discovered he died (accident I believe) or I would be recommending him.

Then about 5 years ago I had a suspected DVT, took a while to get an ultrasound then it was inconclusive (it was the leg I had the big DVT in and my veins are abnormal in that leg) . Took almost a year, on Warfarin, to get a new specialist ultrasound to compare to one taken at Ninewells in early 2000s. And again it was inconclusive!!!! I saw another consultant who was very good, actually read my notes properly and when he was retiring we agreed that I should be signed off. But he said if I ever had another problem the best person for me to contact would be Dr. Colin Baines. He said really positive things about him and implied that he would appreciate my situation, see past the negative tests and do his best to make sure I don't get any more inconclusive tests, 'possible' or 'probable' clots on my record... which is something I definitely don't need!

Hope that helps

[roony13 in reply to Lucky67]

Thank you for your reply it’s really helpful. I too have a complicated/messy history and like you I used to go to St Thomas’ hospital - I was a patient at the lupus clinic there, when it was thought that is what I had. It was there they discovered my LA tests were positive and I was put on aspirin. I moved back to Scotland in 2006. Over the ensuing years I was dismissed by 2 rheumatologists and LA was never tested again and aspirin was stopped. I went back to London for a private appt as I was at my wits end. I was rediagnosed with dermatomyositis. Saw yet another rheumatologist in Scotland who has been distant and uncommunicative. Anyway, as I said in my first post I had the LA tests repeated again and they are still positive. I know there are criteria to be dx with APS and although I haven’t had a miscarriage I did have a baby die in the womb. I haven’t had blood clots as such, only superficial phlebitis and I have Urticarial Vasculitis. I just feel aggrieved that I am told to stop Clopidogrel via a text message from my GP from a stroke consultant I haven’t seen for over 2 years! All I want is a definitive answer that I do not or I do have APS. Thanks again.

[KellyInTexas Administrator in reply to roony13]

And very right you are to such valid feelings… and tests , symptoms , plus criteria having been met, and symptoms!

[roony13 in reply to KellyInTexas]

Thank you 🙏

[Lucky67]

I'm so sorry about your loss - that must have been heartbreaking for you. That was one of my biggest fears during my pregnancies. In some ways I am thankful that I got the clot so I knew I had a problem before.

I went to a clinic at st thomas's, think it was rheumatology - before the Lupus clinic existed I think and then the Lupus clinic. Dr (think it is Prof now) Beverly Hunt was my original consultant when she was in the haemotology (haemophiliac?) dept. In some ways I was lucky to end up at St Thomas's and get the right advice/help.

I originally went into the old Westminster Hospital with the big clot - which was just a slightly swollen/sore leg. I think I had odd veins in that leg anyway as it never really swelled much even though it really was massive - 3 feet long, into the main vein to my heart and completely blocked at hip for a couple of inches in the main vein that is about an inch wide (still was blocked there years later).

I (stupidly maybe) was reading my notes and seems they were shocked at the size of it -maybe a bit out of their depth! Also I think they thought I didn't realise how serious it was - I was on bed rest, being wheeled (in the bed) to the smoking corridor once a day for one cigarette by my friends... which was my way of coping (and I was very young really). One Dr told me I could never have another cigarette in my life, I shouldn't make any sudden movements, strain to go to the loo, I shouldn't even laugh. And one of the nurses told my parents (who were on their way anyway ) to get there quickly as I had a 'clot next to my heart' and might not make it.

They transferred me to St Thomas's after a week or so supposedly to have a filter fitted after a CT scan showed it was in danger of moving - they had my bags packed before I got back to the ward after the scan. The surgeon at St Thomas's was terrible - examined the wrong leg, ignored the CT scan and insisted I had a venogram (old fashioned way of looking at DVTs, which can cause them to move) and when I got upset put me on Valium.

I'd had a rough couple of months anyway - both medically and in life - eg dumped by my boyfriend just before etc. And it caused mobility problems - I had to wear a full length support stocking every day for 10 yrs -not a good look for a 20 something (my blood return is now near normal - I was told I was lucky I was so young when I had the clot) - and my job involved working on my feet which I couldn't do anymore... I actually ended up being suicidal, needing counseling etc .

Anyway Dr Hunt was fantastic - I was a terrible patient... never did what I was supposed to etc. I was really angry I think - and also maybe had PTSD. She was endlessly patient with me and seemed to really care.

I got pregnant by accident when I had only been in Scotland for a couple of months - and Dr Hunt told the consultant at Ninewells how to treat me. It was my second pregnancy (about 6 yrs later) when I ran into the negative test issue - and I had to fight my corner. I think he got the haematologist to talk to me to put my mind at rest -and was surprised when he agreed that I needed to be treated as if I was positive...

Sorry massive post - I do hope you get to see Colin Baines and he is as good as I was led to believe. A good consultant who takes you seriously, reads your notes/background and treats you as an individual really can make the difference to your physical and mental health.

Good Luck

[roony13 in reply to Lucky67]

Thank you. You have been through so much and that is hard at an early age. It’s the mental side of things that I find difficult to deal with. Despite having positive antibodies not only for LA, the dermatomyositis antibodies are also positive and have been for the past 5 years since they were discovered, I’ve been told that fibromyalgia is causing all my problems! I saw Prof D’Cruz at lupus centre and he was the one I saw privately 5 years ago. If I could afford it I’d be right back down there. However, will wait and see what GP says and I will say about Dr Baines. Will let you know how I get on.

Take care

[roony13]

UPDATE . I've spoken to my GP and he is happy for me to remain on my current medications until seen by rheumatology at Ninewells. An appointment letter arrived today also and I will be seen by one of the consultants on 10 Nov, so that is fine. Not too long to wait.