Hi
I haven’t been diagnosed with APS syndrome because the rheumatologist stated that I haven’t had a stroke or miscarriage. Thankfully.
However, I do have to take aspirin for the rest of my life because I have high antibodies and my mum had this condition.
I was wondering what symptoms of this disease can you or do you get?
hi, my understanding is that if the blood test is positive for any of the three antibodies then you have APS. Yes sadly miscarriage and stroke are symptoms but many have APS without ever having either or a blood clot. I was diagnosed and put on daily asprin for years prior to having a blood clot on my brain.
I hope this helps, good luck 💋 x
Hi thanks for your reply.
I’m sorry to hear of your suffering. Having a blood clot on the brain must have been terrifying. How did you manage to get better?
I tested positive for all the blood tests. And apparently they were very high. But I didn’t test positive for lupus. So I don’t have this. Unsure if you can get it years later. My rheumatologist didn’t really say much apart from. I definitely didn’t have it and that was it, take aspirin and bye-bye.,
But my rheumatologist still stated that I do not actually have the syndrome. He said that you only have the syndrome. If you have actually had a miscarriage or a clot therefore, I don’t have the syndrome and I’m at risk of getting it, if I don’t take aspirin for the rest of my life. I was advised a few years ago.
You poor thing. I would definitely ask for a second opinion. I’m no doctor but I like to think I have an understanding of APS.
Lupus- many lupus sufferers do develop APS but you do not have to have lupus to have APS. However one of the three antibodies is called Lupus Anticoagulant. It is not related to Lupus the condition and causes confusion.
My husband recently had a stroke and he was routinely tested for lupus anticoagulant. He was confused as to why they tested him for Lupus. I had to explain that they didn’t!
If you are positive for any of the three antibodies then YOU HAVE APS. It’s as simple as that!
I’m curious as to why if you have positive antibodies for APS, why your Rheumatologist would say you don’t have APS? Thank goodness you are on daily baby asprin.
Unless you experience an event, you usually aren’t given further treatment. Discuss if you should take the pill/HRT.
I’m cautious when travelling and if ill (and need to stay in bed or lie on sofa). Drink lots water, move limbs often, walk around as much as possible. A good thing to do all the time!
So if diagnosed but not having any symptoms, the treatment is asprin. But I feel you do need to take precautions As I said, and research into the condition.
It took a year to recover but I did brain training every night. I played scrabble against the computer. Three games a night. Easy to begin with gradually increasing the difficulty. I still muddle words, loose them and I no longer have a photographic memory but I found I could do crafty things and make brilliant cards. Strange! Shame I didn’t find my singing voice lol
I wish u lots of luck 🍀. Remember I’m just a fellow sufferer not a doctor. 💋 x
In order to receive an official diagnosis you now must meet certain criteria and that includes having evidence of clotting or multiple unexplained miscarriages. Generally only those with thrombotic disease receive warfarin and the dose is now recommended at only 2-3 unless you clot at that INR then high dose changes might be considered . There was zero evidence that a 3-4 INR provided any extra benefits but carried far higher risk of serious bleeds. For pregnancy APS only has Heparin used transiently, ie, before, during and slightly after gestation.
Warfarin is not scientifically proven to resolve any symptoms other than clotting. However, HCL is helpful for fatigue and other ailments. Statins are very useful in helping to prevent a “second hit” other than the antibodies’ first hit and thus with aspirin prove helpful in preventing a first clot but again do nothing other than lower cholesterol and act as a preventative treatment solely.
What? Why? When? How ridiculous!!! There are people who are sero negative they respond to treatment. Remember Prof. Hughes article on the identical twins? Both had the same symptoms. One was antibody positive one negative. Both were treated with Warfarin. Both responded. Where does these new guidelines leave people like them? 💋 x
The new guidelines have been in play in the medical world for years. They were formally instituted in 2019 based on many quality studies. Dr Graham loves anecdotal studies, and case studies have their place in medicine especially because they pave the way for controlled studies to be run to prove or disprove the hypothesis behind the case study. However tons of controlled peer review studies have shown new evidence that is not always in line with the original beliefs held in the 80s about APS.
Seronegative or positive APS should only receive a black label drug like warfarin with evidence of a clot.
medicalcriteria.com/web/sap...
The most recent international guidelines for 2023
pubmed.ncbi.nlm.nih.gov/376...
Thanks for ur reply. I must have missed that! I had a blood clot on brain in June 2015 then went from aspirin to warfarin. Once INR high enough my headaches reduced as did other symptoms. It’s a difficult decision because some patients would benefit from warfarin for symptoms caused by their ‘thick’ blood even though they may never have a clot.
They have tried to prove warfarin aids in headaches and other symptoms in multiple controlled studies with double blind participants and there is no statistically positive proof that warfarin works better than the placebo. Which is one reason they now prefer one has had a clot before using a dangerous drug like warfarin. It does not mean it does not work they just like to know with evidence that benefits outweigh risks before prescribing now a days.
Do you happen to know if I could still have the symptoms of APS without actually having the syndrome and never having a clot or a miscarriage?
I don’t recall asking the rheumatologist this or I just can’t remember. I’m very poorly with other diseases at the moment, but I am going to read up on APS again, in a moment, as it’s been sometime since I read about it because I was told I didn’t have the syndrome.
I can only recall a few of the symptoms and wondered if they were more. As some of the symptoms are very similar to the symptoms I have with Hashimoto’s thyroiditis, and I have teds disease, a recent diagnosis and Adenomyosis. Thank you
You need clinical evidence of clotting or miscarriages too. Positive blood tests by themselves are not enough as there are people who have positive bloods who never have a clot.
So is APS now considered a clotting disorder only? What about the other awful symptoms ? Don’t we deserve treatment for them? It makes me cross that many people are made to suffer until they have a clot.
Lots of people without APS have blood clots too? I get frustrated with the medical profession!!! X
It is good that you are on Aspirin, at times this disease can develop over time, but you will not necessarily have this happen to the same extent as your mother, do keep an eye on any new symptoms, it is always ok to ask questions on here. MaryF
Thank you 🙏 My mum died many years ago now, unfortunately, as a consequence of having this disease, as she kept having ischaemic strokes.
She’d previously had to have some heart surgery. I can’t remember now why but I’m sure it was due to this disease and then was in hospital because of the strokes, where she contracted a fungal chest infection, which caused her to have a heart attack and she died.
Obviously that was a shock, her dying, wasn’t expected, so I had myself tested for APS due to having so many other health issues myself.
what are the symptoms please?
Mine is cerebral so I haven’t had a blood clot etc .My blood tests came back very positive and I have .My symptoms at times is tripping,leg giving way to extreme of not been able to walk besides brain fog etc.I take warfarin.My rheumatologist said aspirin wasn’t enough for me sadly.
Hi. Thank u for sharing, I didn’t know that tripping and legs giving way are symptoms? I have that but it comes in clusters. Once my leg gave way and I fell on the stairs and broke my wrist.
Investigations didn’t shed any light. No one mentioned a connection with aps I do get migraines and have a headache to some degree every day. I suffer pain in muscles, particularly my. Legs. There are so many symptoms other than blood clots, miscarriages and strokes.
I hope u r as well as possible 💋 x
What other symptoms do you get. Apart from the pain in your muscles.
I’m asking because I’m getting widespread pain and it’s very similar to peripheral neuropathy. I keep getting this on an off for years. I’m just wondering if it has any connection to APS.
Im sorry u r suffering so much too. I get a lot of widespread pain and cover myself in rubs to try to ease it. As well as take prescription pain relief.
I have lupus, sjogrens and apparently Fibromyalgia too so it’s hard to know what is from what! 💋 x
Have you had your blood tested for vitamin B12, iron and folate deficiency?
I’m just trying to rule out, which disease is causing the pain, peripheral neuropathy or a vitamin deficiency. I am definitely low in iron. I Need an iron infusion and definitely low in the folate and possibly vitamin B-12.
my primary doctor was trying to get me some capsaicin cream as it’s supposed to be very good for pain relief but it’s so popular. I can’t get it anyway, it’s out of stock everywhere.
I’m using some deep heat pain relief. I’m rubbing that all over and I’m taking morphine, naproxen and nortriptyline but that doesn’t touch the pain at all.
Possibly the folic acid tablets will help me in time, I’m sure my knee pain has subsided slightly but I was just trying to rule out things.
so you haven’t had any blood clots or miscarriages or anything like that, but yet you’ve been diagnosed with a APS also,? who diagnosed you with a APS what is a specialist in APS a rheumatologist?? Sorry for all the questions.
I think I might see if I can see a specialist??
The definition of APS includes both positive blood tests and clinical evidence of clots or miscarriages. It is just possible to get a diagnosis without the clotting/miscarriages but it’s extremely unlikely. It did used to be a bit easier but it was found that giving anticoagulants to people without the clotting evidence was causing some serious bleeding according to my rheumatologist.
In fact a friend who was on full anticoagulation was taken off it recently because she didn’t have evidence of clotting. And that was done by Prof Beverley Hunt at St Thomas’ hospital who is a major expert in APS. She has a thrombosis clinic there as part of Haematology. My friend checked this out with Prof D’Cruz who is a top rheumatologist in lupus & APS who was the one who had diagnosed her but he said if he saw her now he would not have diagnosed her with the full syndrome.
If you want to know the symptoms of APS then there are websites you can check. APS Support UK is one of them.
Hi
Do you happen to know if I could still have the symptoms of APS without actually having the syndrome and never having a clot or a miscarriage?
I don’t recall asking the rheumatologist this or I just can’t remember. I’m very poorly with other diseases at the moment, but I am going to read up on a APS again, in a moment, as it’s been sometime since I read about it because I was told I didn’t have the syndrome.
I can only recall a few of the symptoms and wondered if they were more. As some of the symptoms are very similar to the symptoms I have with Hashimoto’s thyroiditis, and I have teds disease, a recent diagnosis and Adenomyosis. Thank you
The more minor symptoms of APS, those other than clotting, can occur in many other diseases. Many autoimmune diseases have common symptoms. So for example, fatigue and joint pain can be symptoms of lupus, Sjogrens, APS and others and I think fibromyalgia which has not yet been classified as autoimmune.
Autoimmune Diseases can cluster in families too. It doesn’t always mean that everyone has the same illness. In my family my sister was type 1 diabetic, my mother had polymyalgia rheumatica for a couple of years, a Canadian cousin has APS, and an aunt had several miscarriages. I have APS, lupus & Sjogrens.
Hi
Thank you for your reply.
I thought as much. But never seem to remember anything I read. And then, when I do try to read I’m always nodding off
Blaming the 😶🌫️ brain fog.
My dad had rheumatoid arthritis, and my mum had coeliac’s disease, APS, low platelets and anaemia.
So I’m not that surprised I ended up with something like Hashimoto’s thyroiditis and TED’s disease. My sister was lucky though she’s older than me and she hasn’t got anything wrong with her.
if y could get to London at Rhomaa have an excellent centre. I was under Prof. D’Cruz. I think they care and advise well 💋 x
I can’t walk down the street due to too much pain or afford to go private. But thanks for the recommendation
St Thomas I meant to write. It’s NHS
I was diagnosed locally and then by Prof D’Cruz. About 5 years before the clot i had in 2015.
Oh right, thought it might be private. Maybe I should move to London.
I’m not getting anywhere with Drs here in Leeds, West Yorkshire
It is hard work with local doctors understanding pretty much anything about aps other than blood clots, strokes etc. I keep asking do you know if blah blah is caused by aps...he just says no never heard of that. Great! Hoping to see Dr Cruz soon. I'm going to see if my involuntary movements/ so called non epileptic seizures can be caused by aps, as my doctor has never heard of that, only lupus he said. I've been on warfarin for 6 weeks and haven't had an episode, so time will tell. He's retiring so next Dr will probably take me off it....as I've never had a clot!!
I have APS and haven’t had a clot or reoccurring miscarriage.
I did however have many symptoms before they put me on warfarin.
Pins and needles all over body, headaches, numbness, burning myself without feeling it, dizziness, left sided weakness, losing partial vision in my eyes.
I have an inr of 3-4.5 which I have asked to reduce due to a massive bleed. It’s been under review for 2 months as they are worried I will have a clot if it’s lower.
bless u. It’s a horrendous condition xx
Hi ajb,
I am from Sweden. I am not sure you told us if you tested positive twice?
You should test positive to one or two or three of the antibodies twice with 12 weeks apart. Anticardiolipin antibodies , Beta-2 Glycoprotein1, Lupus Anticoagulant are the three test you should take.
Get a Specialist, a Doctor who works with people like us daily. Most often a Rheumatologist or a Hematologist. I have both here but I am tripple positive with high titres since several years back.
Try to learn as much as you can about APS. There are good books like "Sticky Blood Explained" by Kay Thackray or by prof Hughes himself.
Good luck from me
The pains I get are shooting pains going up fingers into my arms and into my feet going up my legs. I don't know if this is APS related. Another I am noticing is since I started taking hydroxychloroquine I hardly get it and I may forget to take for a couple of days and it's back. It took a while for me to realize these might be helping with that
There are 3 markers. Did you test positove for 1, 2 or 3? I have APS and tested positive for 2 of 3 and had multiple miscarriages which is what led to the testing. If you have multiple miscarriages, a stroke (as you mentioned) or a blood clot your doctors will usually run tests. That said, if you test positive, you ha e APS and need to take precautions, of which there are several. Don't take any medications that lead to blood clots, such as birth control, or f you have major surgery your doctors need to know so they can take various precautions. Be sure to talk to your doctors.
Hi
Thanks for your reply.
Yes I tested for two if the blood tests. And the third was for lupus which I don’t have.,
I now take aspirin daily for life as I’m at risk of getting APS but I don’t actually have the syndrome as I haven’t had a miscarriage or blood clots.
I got tested because my mum had this condition and had a stroke.
That's good news. I too have taken low dose aspirin since I was diagnosed with APS. It has been 16 years and I am doing really well. I hope the same for you. For those of us with only a few markers, aspirin is recommended. I take the stronger meds if I have major surgery (c-section and abdominal); both went well with the addition of Lovenox. Best wishes.
Aps
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