Primary aps

[bhaskar2boda]

Can antipospholipid turn in to lupus...

[MaryF Administrator]

Before we answer your question, do you have a diagnosis for Hughes Syndrome/APS?

[bhaskar2boda in reply to MaryF]

In 2009 my left eye is vision loss for 1 minute..then come back when go to hospital they test MRA lacunar infracts in temporal lobe in left side ....and anti cardiolipin antibody igm positive i.e 71 uml.and ANA positive ....am on warfarin therapy 2-3 range .up to now am very healthy not loss eye vision loss up to now .....am not have lupus symptoms and said doctor healthy people also have positive ANA...but don't have lupus in their life.....but my major doubt is ...in google search they said APS is turn into lupus in some people in 10 to 12 years of time where diagnosed aps ...so that am feared very large ...so am asked this question....can aps turn into lupus....please give me answer reply ..am from INDIA

[MaryF Administrator in reply to bhaskar2boda]

Thank you for confirming you diagnosis. A percentage of people with Hughes Syndrome/APS do also have Lupus, some also have Lupus to start with and then later on find they have Hughes Syndrome/APS. Once you have one autoimmune disease it is common to develop more, however it does not mean you will definitely develop Lupus.I enclose our charity website for you to read: ghic.world/ Best wishes. MaryF

[bhaskar2boda in reply to MaryF]

How many years u have primary aps up to now when was diagnosed it

[MaryF Administrator in reply to bhaskar2boda]

I had very late diagnosis for Lupus and Hughes Syndrome/APS! So not totally clear in my case. MaryF

[Jmiller623 in reply to bhaskar2boda]

Yes, it can. Per KellyInTexas diagram and a study conducted with 52 patients, 5% of people with primary APS developed lupus over a 10 year period. It does not share how long after APS diagnosis, each person developed lupus. But to answer your question, it is rare but not unheard of.

[Jmiller623]

It can be associated with lupus but they are technically two different diagnoses. They both have their own clinical and laboratory criteria. However the immunologic criteria of lupus does overlap with APS. The biggest difference that rheumatologists focus on is whether your ANA/dsDNA is positive which pings for lupus on their radar especially if already diagnosed with APS.

Hope this helps shed clarity on your question.

[MaryF Administrator]

To be clear, many of us have more than one diagnosis Hughes Syndrome/APS and Lupus are often described by Prof Hughes as cousins! Naturally blood tests are involved We would still like to know if you have a diagnosis for Hughes Syndrome/APS. as administrators of this forum we do need to ask when somebody new joins, as sometimes people follow the wrong forum, or need to provide more information in order for us to answer detailed questions. Also at times we have people messing around, which is why you will always see us ask a new person if they have this disease, before we enter into answering questions, thank you in advance for understanding this. MaryF

[KellyInTexas Administrator]

Hello,

The best way to specifically answer your question is with a photograph of a Venn diagram, which unfortunately I cannot insert here due to the limitations of the HU platform.

I assume you are monitoring the replies to your post.

I am going to take a photograph from a book called Hughes Syndrome: Highways and Byways, written by Drs Graham Hughes and Munther A. Khamashta.

I will post this photo in a separate post later this evening ( Texas USA time zone.) please look for it.

Best wishes ,

Kelly

[Lure2]

I see you have written "Primary APS" (antiphospholipidsyndrome) on your question.

That means that you do not have another autoimmun illness if the Specialist knows this illness which very few do not.

.

I have Primary APS and I know that other autoimmun illnesses like Sjögrens, SLE (Lupus), Reumatoid Artritis etc can follow later on.

Now you have got a lot of answers on your question but it is difficult to diagnose these different autoimmun illnesses as they often go hand in hand. The most important thing is to have a Specialist who daily works with these questions, usually a Hematolgist or a Rheumatologist.

Also if you are on Warfarin with those neurological symptoms (I also lost my vision on one eye) an INR of 2.0 - 3.0 is a very low INR (too low). We usually need an INR over 3.5 to be without symptoms.

APS means too thick blood which has to be properly and stable thinned with an anticoagulation-drug like Warfarin.

[bhaskar2boda in reply to Lure2]

How many years up to now u have primary aps when it diagnosed first

[Lure2 in reply to bhaskar2boda]

I was diagnosed 2002 in Sweden and I have been Primary APS all the time since that date, as we have not yet found any other autoimmun illness. I have only APS-Specialists taking care of me. I have all three autoantibodies positive all the time with persistently high titres. Both IgG and IgM and also Lupus Anticoagulant (one of the three autoantibodies they test in the blood to get a diagnose of APS).

[Lure2 in reply to bhaskar2boda]

If I were you I would try to get a Specialist and also read about APS as much as possible. Knowledge is power.

Do not worry about Lupus (SLE) but try to get your INR at a higher level than 2.0 - 3.0. Usually patients with primary APS and Lupus Anticoagulant positive also need at least an INR of 3.5. I have heart-issues and Pulmonary hypertension due to high bloodpressure (APS-symptom) and need an INR of 4.0. Remember anticoagulation is first priority for us.

[GinaD]

If you want to be as proactive as possible to avoid future autoimmune illnesses you might explore Functional Medicine. New data points to: undiagnosed and untreated gluten sensitivity, undiagnosed and untreated fungal infection( usually candida,) or high heavy metal content, eating too much sugar and carbs too often, ( rarely allowing your body to go into ketosis/repair model ) --All of which can be identified and treated by a Functional Med doc who wants to avoid future illnesses as well as treat any current ones.

After I consulted with FM docs at Cleveland Clinic all of my blood markers for APS fell from high to normal. And though I am still on warfarin, I remain totally asymptomatic with an INR of 2 or less. In fact, some hematologists are flabbergasted and insist that my well documented original diagnosis of APS must have been mistaken, because, after all - autoimmune illnesses stick around for life, don't they?

Eliminating systemic candida infections, diagnosing a previously unknown food allergy, avoiding breakfast twice a week ( increasing post dinner fasting time,) and sweating out toxic metals -- these couldn't possibly result in a so-called " cure" for autoimmunity? Now could it?

But here I am. Still on warfarin but feeling better at age 64 then I did at age 24!

[bhaskar2boda in reply to GinaD]

In which year u will diagnosed...how much year now...

[GinaD]

I was finally diagnosed in 2001, after 20 years of off and on blood clots and a whole lifetime of repeating cases of”mononucleosis,” which in hind sight, I and some current docs think was probably lupus. The lupus symptoms are an Ed after a steroid treatment and improving my diet. And everything changed ( for the better) when I discovered I had. celiac/gluten sensitivity. 3months on a GF diet and I was not anemic for the first time in my life. Then after FMed all or most of my med allergies disappeared. AND as I said, I am asymptomatic with a very low INR. I have more energy at age 64 then I had at age 24.

[bhaskar2boda]

Told me u r lab reports time by time from 2001...i.e acL igm igg ..lupus anticoagulant...beta 2 glycoprotein..ana antibody ...anti ds dna...which positive which are negative