Referral

[debiann]

Im having problems getting my GP to refer me to a rheumotologist....

I tested positive twice for lupus anticoagulant after having a stroke and then a DVT whilst on warfarin.... I had an INR of 3-4 when I was on warfarin....my GP switched me to rivaroxaban years ago and I have been fine on it but after reading that people who have had a stroke and have a INR of 3-4 I contacted my GP who seemed surprised that I tested for LA although she didnt say it straight out. But she wont refer me... my memory is poor since the stroke. .. i think she said if i need to be on warfarin she will find out. I havent heard a thing from her since then....

Last year I temporarily lost the sight in one eye.. it lasted for minutes.... but was pretty scary. I told my neuro and he didnt seem to be concerned particularly. It hasnt happened since then but I wonder if it is all related to APS ?

Also I had a shap burning pain in my wrist.. looked down and i have a red splotch where the pain was... just out of the blue ..that was probably 2 weeks ago and its still there and painful at times.

I would be interested in hearing your thoughts.... thank you in advance

[Lure2]

It is not good that GP does not want to refer you to a Specialist which we need with this illness. A Doctor who knows autoimmun illnesses and works with that daily.

Perhaps it is difficult to change GP but in some way you need a Specialist (I am from Sweden and are not so good on your type of healthcare.) Probably you need Warfarin and not Rivaroxaban as you still get symptoms from your APS.

I also lost my vision on one eye and other vision-symptoms. I am triplepositive with high titres. The Ophtalmologist (eye-Specialist) I saw said it was "Amaurosis Fugax" when I lost my sight for a couple of minutes on my right eye and that I needed Warfarin.

Please tell GP to refer you to an Ophtalmologist and at the same time look for a Specialist.

That is my advice from not knowing you.

[MaryF Administrator]

HI, we have a list of specialists on here, over on the right hand side under 'pinned posts', and of course some here on our charity website: ghic.world/ If I were you, I would go back to the GP, and take your most assertive and articulate friend, colleague, neighbour or relative with you to push this forward, you can give them the charity website to look at, plus this article, if they still say no, then you need to write a very firm and to the point letter to your practice manager and a copy to PALs, explaining that if something is to go wrong for you, due to lack of modern care, you will behaving to take this up with them formally: the-rheumatologist.org/arti...

Make sure you show the GP all the specialists nearest to you.

MaryF

[Mikki54]

I haven’t been on this forum in a while because I am no longer on Warfarin or on any intervention for APS.

My concern for you is that the symptoms you’re experiencing might not be due to the APS and may well be due to the therapy you’re receiving.

Here in America, with this diagnosis, all doctors want to do is send you to a hematologist. They don’t look at APS as auto immune and I had to fight to get to rheumatology. Eventually, after insisting, I was sent to a rheumatologist who was essentially humoring me. She said, ‘you just need to take Warfarin for life and deal with your hematologist’. A few months later, after experiencing bleeding in my brain, to which I was alerted by a two week headache, I ended up in the hospital where they took me off of Warfarin to stop the bleeding.

Encouraged by a wonderful nurse while there, I resolved to see another rheumatologist. After I got out, I made an appointment with a different one. When I got there, he asked me why I thought I had APS and I told him because everyone tells me I do. He then asked how I was diagnosed. I told him the entire story; that I’d had blood clots in the lungs after an operation to replace a hip. They were severe and everywhere. I was put on Warfarin immediately. While still in the hospital, I was tested to see if I had a genetic propensity. The test came back positive for lupus anticoagulant. After I’d gotten out of the hospital, they sent me to a hematologist who explained the meaning of the results and told me that I needed to stay on Warfarin for life. (When I said I wanted to investigate it further he was annoyed and dismissive). This was when I called my doctor and pressed to see the first rheumatologist. (My doctor tried to talk me out of it but, gave up and sent me to her.) As dismissive as she turned out to be, I at least got her to order the 12 week test to see if I still tested positive. I did not test positive at that point. Still, I stayed on it because everyone told me I must regardless of the results of that 12 week test. About three months later I had the brain bleed. I was tested again for APS and it was negative again. It was after that, that I made the appointment with him, the second rheumatologist. After listening to the whole story, he said, “I don’t think you have it”. Needless to say that was stunning news to me. He said that a false positive is not uncommon if one tests for APS when the patient is already on Warfarin. This bit of news had me wondering how many people were on blood thinners for life who shouldn’t be. Still, none of the doctors, including him, wanted to be the one to take me off of it. So I did it. I wasn’t interested in another brain-bleed episode... That was three years ago.

I may seem that I gave you more detail than necessary, but it’s because I want to emphasize how much resistance I met while trying to sort this out. It can be formidable, but it’s important that you find the energy for it.

Interestingly, later when looking at my records on a genetic testing site, (I had done this test many years before out of interest in my family tree) they had updated some medical stuff. Included in that were certain drugs that I might find I’d be overly sensitive to and at the top of that list was Warfarin. I absolutely believe that had I stayed on it, I would’ve run my health down with more brain bleeds and who knows what else. It was fortunate that I carried the fight on a little bit longer and had that conversation with the second rheumatologist. I shall thank that nurse forever for encouraging me to stay at it and to advocate for better answers from these doctors.

I don’t know what your circumstances are exactly, but if your original diagnosis was arrived at after you were already on a blood thinner, you might want to revisit that diagnosis. It sounds to me as though you are having problems that should be taken much more seriously by your doctors. Don’t give up. Press them to take you seriously. I am not advocating that you get off of your blood thinner, but it absolutely could be the source of the problems you’re having.

When I made the decision to stop taking Warfarin, I was certainly a bit concerned because every doctor, including my general practitioner was advocating that I stay on it forever. Death awaited if I went against their expertise... Still, I had a very strong instinct that it was wrong for me to stay on it. By the time I finally stop taking it, I had accumulated enough evidence to be fairly certain that it was the right thing to do. Your doctors may feel that the price you are paying (symptoms) is the price you must pay for the therapy that they feel you must have. I don’t know, but you need to find out if this is the reason they are dismissive and you need to know the cause of your symptoms.

I hope this story is helpful in someway. It may not be, but hopefully, it will be for someone else reading this thread.

I wish you all the luck and good health you can possibly get.

[Lure2 in reply to Mikki54]

When on Warfarin you get a "false" answer on your Lupus Anticoagulant blood-test.

I am triplepositive and have been on Warfarin for 8 years and Anticardiolipin antibody (aCL) and Anti-beta2-Glycoprotein-1 (they do 3 tests for APS) I take at least once every year.

You were once (before Warfarin) positive to LA so you might still be positive to it. Antibodies go up and down all the time and for some, like me, also very perstistant.

I totally agree with what APsnotFab says. She is very knowledable of this illness and a very wise woman. I am from Sweden and have been on this site for 6-7 years now.

[debiann in reply to Lure2]

As far as I am aware I wasnt in warfarin when the test was done..

[debiann in reply to debiann]

I was in a coma when they did the blood tests and was blissfully unaware

[HollyHeski Administrator]

You are totally right in seeking an APS specialist, it was only earlier this year that the medical profession advised triple positive patients to NOT take rivaroxaban.

That doesn't necessarily mean you need to change but you do need an expert to go through this with you.

Take MaryF's advise and push further, you are entitled to this.

I have learnt over the years to listen to my body, follow my instincts and push hard when needed, not always easy?!

Even if it's just reassurance we need, we need confidence in our health plan, follow your instincts to get this for you.

[debiann in reply to HollyHeski]

How do you know if you're triple positive?

[HollyHeski Administrator in reply to debiann]

Positive result from the following blood tests-

1. Anticardiolipin antibody (aCL)• This relatively simple blood test is now performed worldwide and is the main diagnostic test for Hughes Syndrome.

2. "Lupus Anticoagulant" (LA)• This confusingly named blood test (it is not a test for lupus), like aCL, is useful, but also negative in 30% of cases of Hughes Syndrome.

3. Anti-Beta2-glycoprotein-1 (anti-B2GP1)• This is a newer test, now also becoming routine. 'beta 2-GP1' is a protein known to be important in clotting.

[debiann in reply to HollyHeski]

All I've Been told is that I tested positive for lupus anticoagulant in August 2008 when I had a stroke and in December 2008 also when I had a dvt in my leg

[HollyHeski Administrator in reply to debiann]

Maybe request copies of your notes to see what they tested?

Either way, pursue in getting to see an APS specialist, even if you have to change GP.

[pug002]

Hi there, so sorry to hear about the problems and GP problems. I am no longer on warfarin, I had a stroke after open heart surgery and then got epilepsy. My neurologist is fantastic and has epilepsy under control. A cardiologist took me off apixabam and neuro went crazy and referred me back to original cardiologist as he said I was in danger of more strokes. I have had brain bleeds and have Amyloid Angiopathy in the brain, In the meantime they were going to put a watchman device to stop blood pooling in left atrium but during the start of procedure discovered it had been taken care of at the mitral valve repair. Since then I have had a TIA and am seeing my original cardiologist next week. Will be seeing OT, speech pathologist tomorrow. I changed my GP as I was getting fed up with that surgery practice. My rheumatologist had me on plaquinal for rheumatoid and said they would affect eyes but not for 5 years, I stopped them as they started to affect them. I get flashes in left eye, which they say are migraine, but don’t get headaches with them!

I agree with a person who has said go to your GP and be forceful and demand to see someone who can get to the bottom of this. If you have tested positive to Lupus what is their problem in not referring you on?

I find it amazing some Drs are so keen to just refer on and won’t do anything themselves and others just string you along. All the best and just stand your ground.

[debiann in reply to pug002]

Thank you.... Looks like I need to battle to get an apptmnt with my gp

[debiann]

Hi... I tested positive for lupus anticoagulant twice.... About 3 months apart.... And before I was put on warfarin.. I had a clot on my brain and a dvt whilst on warfarin.. Was told I'd be on warfarin for life.. My gp changed it to rivaroxaban... I've gone blind in one eye temporarily since I've been on it but otherwise well.. How do you know if you're triple positive?

[Lure2 in reply to debiann]

Hi,

Were you put on Warfarin before you did the bloodtest for Lupus Anticoagulant or after?

When diagnose APS they take 3 bloodtests;

Anticardiolipin antibodies (aCL)

Lupus Anticoagulant (LA)

Anti-beta2-Glycoprotein 1 (anti-B2GP1)

Find out with the Doctor who took the bloodtests if they did the other 2 tests. Ask for a copy!

Usually when we are on Warfarin it is too late to take the Lupus Anticoagulant-test as it will give a false answer. I have been on Warfarin for 8 years and I am triplepositive (before Warfarin) but still positive to the other 2. They do not take LA any longer. They assume i am still positive to it as i was it for a long time and also had very high titres on the other two and still have.

But your GP should not have changed your Warfarin.....!? to Rivaroxaban. I suggest you talk with a Specialist of APS about this as you should not be blind on one eye after you have started Rivaroxaban. We know that Warfarin is the best drug.

If you had a clot and a dvt whilst on Warfarin probably you were not set on an INR high enough and also stable. We usually need an INR of at least 3.5 to be without symptoms like clots and emboli etc. What INR were you on?

[debiann in reply to Lure2]

I was on 3 - 4 and had a dvt whilst on warfarin but I don't know whether I was 3-4 then or whether it was put up after the dvt