Is it possible to be cured?

[Leenalina]

I heard the case that doctor said to patient that she is cured. First she had high antibodies and strokes. After years the antibodies disappeared and doctor decided to stop medication since there was no phospholipide antibodies and no symptoms. I thought it is dangerous to stop all medication. Or what do you think? In general can this syndrome be cured by time. The doctor had said that it is common that when patient gets older the syndrome disappears.

[MaryF Administrator]

Hi there, it sounds like the doctor in question, only has a limited grasp of the condition and is missing the finer detail. There is no cure, but effective management of the condition with professional care will provide the best outcome, everybody is different and there is no one size fits all, as some have multiple disease. MaryF x

[Manofmendip in reply to MaryF]

I agree. Dave x

[Leenalina]

Ok, thank you. Is there anything official information about this that I could show to some people? I tried to look from Hughes Foundation pages, but didn't find.

[MaryF Administrator in reply to Leenalina]

On the pages it gives the list of symptoms, however if you contact Kate Hindle directly at the charity or via here KateH, then she may shed some more light on suitable reading material in specific response to your question. MaryF x

[Leenalina in reply to MaryF]

Thanks Mary, I'll contact KateH.

[tassie]

The level of antibodies can go up and down and sometimes appear to disappear. Some women only have them when pregnant. It doesn't mean you are cured if they are not detectable just that your body is not producing antibodies at that particular time or not at a level that they can detect.

I agree with Mary and would question this doctors grasp on the condition.

[Hidden]

St T's told me that I had "grown out" of APS because I currenly test negative. Hmmm!

[MaryF Administrator in reply to Hidden]

Do you still have the symptoms? MaryF x

[Hidden in reply to MaryF]

The headaches have improved 95% on warfarin, still get word confusion and memory loss but this occurs mainly when my blood is out of range. Have had a lovely afternoon out with friends to the theatre and meal afterwards but now absolutely shattered. Time for my bed!

[MaryF Administrator in reply to Hidden]

Well there is some highly indicative feedback there regarding the warfarin! Have a great rest of evening. MaryF x

[stillwaiting in reply to Hidden]

St T's told me that I only have obstetric APS yet I am not pregnant but now test for two antibodies whereas last year it was just one. Consequently they want me to stop warfarin.

Lynn.x.

[tim47]

Before our condition was given it's present label I was a patient of an exceedingly eminent professor at Oxford. Not only was he a brilliant doctor, he was a lovely man that anyone could talk to in comfort about health and other matters (Liverpool FC was a favourite topic of his). It is not misleading to suggest that he saved my life on several occasions with his skill, patience and commitment. I remember particularly, two of many friendly conversations over 25 odd years. Firstly when he put me on warfarin when he said it was for life - adding that he would have to be on some serious level of anxiety drug before he would even consider me stopping warfarin. That was way before I had a stroke and multiple TIAs- I have been on warfarin ever since and will never come off it.

(The second concerned avoiding hospitals and surgeons where possible)

[MaryF Administrator in reply to tim47]

How refreshing to hear your account. I can divide the medical staff into two camps regarding the care of my five conditions, those who can carefully take a full medical history and also take into account other family members, and those who are blase and do neither of those things, and only look at blood results and rule out sero negativity. Luckily I have in the main only fully informed medical staff around me these days, and the same applies to my children! MaryF x

[Carole-J]

I am sorry but this condition as far as I am aware is incurable, the doctors don't even know for sure what Hughes can do to people, they are still finding out. I would change doctor, if you look on this site and others you will get more of an insight into the condition itself. Keep well regards CaroleJ

[GinaD]

I was diagnosed and placed on warfarin in 2000 after a series of mini strokes/ TIAs. My antibodies were then quite high, and remained so for another 3years until I accidentally discovered that going gluten free banished the horrid and embaressing GI troubles I had been having.

Subsequent to going GF all my rheumatoid factors , the IGM, the IGA and particularly the IGG fell from high to normal. My cardiolipin antibody fell from very high to borderline normal,( it turned to totally normal and boring 2years later.). Oddly, the gluten transglutaminase test,( blood test for gluten allergies,) was normal as well, but this test was not run until I had been GF for 3 months. All of my doctors, who were treating me during those years believe I have Celiac and should remain gluten free. All of my local doctors also want me to stay on warfarin even though my tests are now normal. The hematologist who diagnosed me explained that if I stop the warfarin,my immune system will detect a rise in what it mistakenly has identified as a pathogen and will start cranking out those antibodies again, leading to more strokes and clots.

But I travelled out of state for a hip replacement-- to a medical center known for their expertise in handling APLS/Hughes patients. And the hematologist there. ( who supposedly knows more then my local docs,) suggests I do not have APLS and should discontinue warfarin. He makes this assertion based on my current, and recent, "boring" bloodworm. I can not show him the blood work from then 2000es as here in the States docs are transitioning from paper to digital records. These transfers cost time and money, so records over 10 years old are/ were thrown out. So I have no hard copies to show him and apparently, he either doesn't believe me or he believes the beata 2glycoprotein test ( I am negative ) is the be all and end all of diagnostic testing for APLS.

So here I am. My hip was replaced. I did fairly well with surgery, though unexplained blood pressure crash after surgery meant I did not transition with lovanox through the days after surgery before the oral warfarin kicked in. Which gives this out of town doc more reason to believe I do not gave APLS.

So, in conclusion to this rambling history --I am in a similar situation. I don't know if there is some new data about APLS that I am not privy to. But personally --I think lower systemic Inflamation due to the GF Diet as well as menopause's farewell to higher estrogen levels have calmed my immune system.

But if I have to, I'll set up heat lights in the basement and grow curarie myself rather then give up the medicine which saved my life in 2000!

[MaryF Administrator in reply to GinaD]

There is no new data to say the disease cures itself or goes away, however I do think gluten with any autoimmune condition puts another layer of stress on the body, I finally showed up that I had Systemic Lupus, but had the symptoms for decades. Some dangerous assumptions are made at times about Hughes Syndrome/APS etc and this is made worse if patients are sero negative. I am in a similar position despite my history of multiple clots and the obvious symptoms. Hopefully as patients we all learn from each other on here and raise awareness. All the best to you. I have been gluten free nearly 18 months now, and will never go back on it. MaryF x

[Lure2 in reply to MaryF]

Hi Gina,

what is the difference bitween APS and APLS? What I understand the doctors back home think you shall remain on warfarin?

Not even the specialists know this new illness enough. As Mary says we learn from eachother. My antibodies has always been high on all four (discovered in 2002). I have heard of people that are zeronegative after having high antibodies (this was beta2Glycoprotein 1).

Hope they listen to you Gina!

Good luck and hope your hip will "recover"!

Kerstin in Stockholm

[GinaD in reply to Lure2]

My hip is recovering splendidly! No more pain and no more lower body muscle cramps! I return for a follow up with the skeptical hematologist in Feb. I have dug up all the blood work that still exists. We'll see how it goes.

[MaryF Administrator in reply to GinaD]

Great to hear your good news! MaryF x

[Lure2 in reply to GinaD]

Thank you for answering. Good to hear that you are without pain. Kerstin

[GinaD in reply to Lure2]

APS and APLS are the same thing. Just some here in the States use the shorted initials for Antiphospholipid syndrome, some the longer. Personally,I prefer Sludge Blood.

[fitzyc]

Hi everyone. ..Been through the mill. For about 15 years now, everything. Calmed down. Seizure s blood pressure renal function improved do even shocked gradually. Coming. Off some of my tablets all tks. To warfrain and the Irish heart foundation for doing survey. On me and the lifestyle. Changes ....been mad few years now but 2misscarraiges. And health girl born at 26 weeks..now I would like to gradually. Try go back working. But a joke no one will listen keep telling me if I go back will lose my inability pension..and badly medical card ...aps is there and its like sitting. Here to see what else gives me only41...

[lotsoflove]

Hi after 5m/c I was diagnosed aps and told to take aspirin whilst pregnant this was 20 years ago. I have never taken aspirin or anti coagulant at any other time and have never been referred to a consultant regarding this, so I just presumed it was something I only had whilst pregnant. However during my last pregnancy aged 40/41 I did not find out til I was 17 weeks gone and before I would have miscarried before 16 weeks without aspirin, this time though the pregnancy was problem free in fact I had to stop taking aspirin because of nose bleeds, so yes I think my aps has gone away but I can't be sure as like I said I have never seen anyone regarding it, I mentioned it to my gp once but he wasn't interested. I do have very bad memory and recognising people is a problem for me.