My daughter's GP still insists that her APS has gone.

[Teanna]

Hi all,

My daughter was diagnosed with APS in 2002 and when she had my first grandchild in 2010 they put her on fragmin throughout pregnancy, all went well then she fell pregnant again 6mths later and she was kept on fragmin, and again all went well. The problem now is that for the last year her GP, (her old gp left, so she's with someone new), told her that her APS has gone. I've been reassured that once getting APS it never goes. I told my daughter this and she saw her GP again and asked for another blood test and the GP totally refused her a blood test and told her that it's a waste of time.

Does anyone know what she could do as I've been told once you have APS it never goes.

Regards Teanna

[Lure2]

Hi Teanna,

Good to hear from you again but sorry you have difficulties both with yourself and also with your daughter.

You must be very glad that the two pregnancies went so well.

I think you live in the US (not quite sure though) and that we have suggested you should have a Specialist of autoimmun illnesses (the the Doctor you told us about as he was not interested any longer). Very important.

You say that both you and your daughter has the same symptoms. Has your daughter been on any bloodthinner lately? She must not stop them in that case and APS will never go away. Exactly as you say!

You have to find a Specialist of autoimmun illnesses (perhaps the same one for you both if you live not far away from eachother of course). The Specialists do not grow on threes (as we say in Sweden).

She must be allowed to take the three antibodies twice within 12 weeks apart if she has not already done that. Otherwise she must be allowed to take them a third time, especially if the GP says she shall stop the anticoagulation. As she was diagnosed in 2002 did she take anticoagulation before her first pregnancy 2010?

Best wishes to you both from Kerstin in Stockholm

[MaryF Administrator]

Hi, I suggest that you find a GP that understands the condition and a specialist, also perhaps politely give give the GP one of Prof Hughes' books to read, also this paper: the-rheumatologist.org/arti...

It is not unusual to go in and out of positive/negative testing, I have in the past, also some are worse in pregnancy, I was, really bad, and less so outside of pregnancy, although with myself I have so many conditions, they do over lap. MaryF

[Teanna in reply to MaryF]

Hi Mary & Kerstin,

I’m live in the UK.

Firstly my daughter was on just an aspirin everyday until she fell pregnant, then she took fragmin twice daily, for 3 yrs. It was a few months after her second child she had a routine check up at her GPs, and was told that her APS has gone and no longer needs to have any blood thinner. I told her it does not go, and she has to be re-tested. She did go back but her gp insisted she nolonger has it. But my daughter also has Fibromyalgia and another condition regarding her joints etc. She also has polystic overies. Would her other conditions give her false readings? I’m very worried as my dad (sadly passed away), he had DVTs but would not be tested for APS because it was to expensive (I did not know this until I ask his doctor in a hospital if he could be tested, he replied “no we don’t do that test here). my mum has CIPD not COPD and Lupus. So as you can see our family suffer badly with bad circulation, etc. my brother, my other daughter and myself has Under active Thyroid. So it seems we have some kind of Auto immune disease.

I’m in the same situation, but got my appointments from next week (at last).

Thank you for your help

Teanna

[GinaD]

When I went down to Duke Hospital (a 5 hour drive for me) to have my hip replaced I consulted with their hematologist for the bridging before and after my procedure. The hematologist there did bridge me to and from warfarin, but he was convinced that I do not, and never have had, APLS. My blood tests were all negative, and those positive blood tests from 2000, 2001 had been lost. (Welcome to America, where our politiicians constantly tell us we have the best health care in the world.) I did not comply with his plea to discontinue warfarin, and remain on warfarin to this day.

I suspect there is some huge disagreement concerning APS prevalence. I have read somewhere — here? — that many doctors are convinced that there is no way that APS and other autoimmune diseases are as prevalent as blood tests suggest. So, there is an attitude that antibodies are transient and should not be relied on for a diagnosis, and long term treatment surely should not be based on what they believe are transient blood values.

So —- are APS and other autoimmune diseases really that prevalent? How could that be? My, “I’m an English major housewife and not qualified to have an opinion” opinion is that yes, autoimmunity in the 1st World IS that prevalent because we immerse ourselves in chemicals, phamaceuticals and excess sugars. Which is why I am a fan of what in the US is called “functional medicine.”

I know my lengthy responce does not answer your question, but it may provide perspective on why the GP is so stubborn. He has his reasons.

[leakeadea]

Teanna,

I really feel for you and your daughter. I truly don't understand why these GPs and doctors think it's ok to play God with our lives because that's what they're doing when they make judgements based on the blood test results alone, even Professor Hughes doesn't do that and he wrote the book on APS so to speak.

AbsNotFab,

I 100% agree that we should fight to be heard, ie when we have all the clinical features of APS, have a family history of multiple autoimmune conditions and a history of blood clotting etc. But what do you do when one of the top APS specialists will only diagnose you, or I should say not diagnose you with APS based on blood tests alone? Blood tests taken while on anticoagulants?

I am currently being judged by the numbers on a piece of paper, how can a patient fight against this?

Claire ☹️

[MaryF Administrator]

Well said, I quite agree, with everything said here. Any GP being guided by the right specialist is going to manage the patient better, especially if one from our list of recommended specialists. I hope all the dots get joined for you and your family. MaryF