I have already put up this post before I actually saw this link.
I'm an APS sufferer, have thrombosis, I've had many DVT's & PE's. I know that APS is genetic, my mum has Lupus. Would I've have got APS through my mum or would it be someone that's got APS?
I was told by Prof. Hunt that I aquired it, she said I didnt catch it, it wasnt iinheriete, I aquired it, according to my blood tests between the age 18-25.
I have read on this site some have it run in families.
Hi,
That's interesting, this is where the confusing part comes in, I was told it was genetic, so someone in my family, (parents/grandparents or further back), had it, but so far I'm the only one. My daughter gets the pregnancy APS, then it goes after giving birth.
I'm trying to find out if APS & Lupus (I know they are part of the same family, called lipids), but with my mum having lupus, could that have caused me to have APS?
My uncle probably had APS and Lupus. He had his first amputation aged 20, and died age 50 from organ failure. Poor man had been told he had brought everything upon himself and that it was smoking related.
My brother was diagnosed with type 1 diabetes aged 40, my gran had pernicious anaemia. My dad has pemphigus. I have a collection of auto immune diseases so I'm inclined to think there is a familial link.
My mum had it , I have it and now my daughter has it 😐.
Oh, I have three daughters, my greatest fear is that they will develop this.
Prof Hughes thinks mine was caused by Glandular Fever that i had at age 27, caused by Epstein Barr virus.
Hi,
By the replies on APS being genetic, I don't think anyone knows how it starts. I'm going to try and do some digging.
Thank you for replying
Tina
I wasn't aware it was hereditary
It runs is some families so it can be inherited. They say it needs a "trigger" (operation, long-flight, accident , Oestrogen) or a very special event to start the process. Who knows.
Important to have knowledge which I believe is power.
Kerstin in Stockholm
Interesting as I've never felt the same since I had my son, especially not regarding my memory. That was 20 years ago!
Hi there,
I see you are on Lupus so I understand you have Lupus. Have you read here about APS (Sticky Blood) ans now you think you could have that too?
In that case talk with your Specialist of Lupus as it is probably a Rheumatologist and they also know this illness. Ask him what he thinks and ev ask him to do the 3 bloodtests for APS. You should do them twice and with 12 weeks apart (between them).
Best wishes from Kerstin in Stockholm
I heard that APS is not genetic. It is acquired. However, members of same family can have genetic predispositions for autoimmune disorders. Especially if the autoimmunes are "cousins." Predispositions mean that you carry some sort of phosolipids that is either missing factors or more than supposed to have. Triggers happen in our systems such as Epstein Barr, Shingles or plane ride, sometimes even pregnancies for example. This is what usually causes the immune system to go ballistic and attack healthy parts of the body. Thus acquiring autoimmune disorders. The details are a bit confusing when educating our selves but this is how it was explained to me.
I acquired mine when I was in my late 20s after an operation, I then went on to have recurrent DVT's, however my mother was diagnosed with it in her 70s, but she had a PE in her 20s due to pill, then went on to have a heart attack at 70 and then TIAs which led to dementia. She passed away a few weeks ago and I wonder had she been diagnosed with it earlier and been on warfarin if she may not have suffered with the heart attack etc. Also my brother has had PEs but has not been tested for APS. It is a very confusing one but Tammylola has described it pretty well I thought. I did however have symptoms as a child and teenager ie low immune system and also my mother was always ill, headaches, missing words, muddling words as do I. But I have not come across anyones else in the family who has similar symptoms.....yet.
Hi Molly,
So sorry about the loss of your mother.
I hope your brother will test for APS after his PEs as this illness is about too sticky blood as you know and anticoagulation is a must!
Best wishes from Kerstin in Stockholm
Hi,
Sorry to hear about your mother.
Your story is pretty similar to mine, it was my father that got DVT's but not a PE. I insisted that he was to be tested but the hospital told him that the test was to expensive, (I've never heard of this), but he got so many DVT's, but then sadly he passed away not long ago from a heart attack.
But as Kerstin said, it's a must for your brother to be tested.
Good luck
Tina
Thank you Kerstin and Tina, how sad for you too Tina. If only we could turn back the clock!! I keep on at my brother but I do not think he takes it all seriously. I think that because there is no actual physical symptoms ie plaster on leg etc he thinks I make half of my symptoms up. i am a bit of a joke in my family, they just think I am always getting things wrong with me but they do not understand what APS actually is!! I have given my brother Prof Hughes books and information but he never does anything about it.
Hi,
Thank you very much, yes it very hard esp when I think I could have pushed more for a test for my dad, but the hospital he was under did not know enough about APS etc.
I found the same thing with my family, it was only when I mentioned"Look up Hughes syndrome", that's when I got a response from my family, and also their excuse was, "what they can't see, what you moaning about", that's when it changed, as I said "look it up" but by that time they started to take note, my legs started to turn black, (my blood goes down ok, but it does not come up), hence the discolouration. But yes, families are difficult if they can't see it.
I wish you all the best, keep me informed.
Good luck, take care
Tina
Tina, do you have post thrombotic syndrome?
Hi,
Yes but it was diagnosed when a blood test came back saying a blood clot was present. It was not until then when they investigated more it was thrombosis, and because I'm having so many of these, they called it thrombotic syndrome. Do you get many thrombosis ?
Regards
Tina
I only had two massive clots in leg and lungs. I have not clotted since. Post Thrombotic Syndrome is when the veins in your legs become damaged from an extensive DVT, or from recurrent DVT's. It makes your leg throb, feel heavy, and swell whenever you stand up, or walk for long periods of time. That is what I have.
My grandad used to put his leg up whenever he sat down which he said was because of his "thrombosis " do you think maybe this was what he had?
Yes. I put my leg up because it will start to get sore and throb if I leave it on the ground. It also hurts being up as well, but it takes longer for the pain to set in. Then it gets alleviated if I walk around for a minute or two. Then it comes back from standing. It is a weird pain that comes and goes all day and night. Your Gramps probably had a swollen leg due to circulation issues. I have an almost completely blocked deep vein in my right leg.
My family thinks the same things about me. I even sometimes wonder if I'm a nutcase, then there are days like today where I am struggling to just stand up and prepare a meal. No one can understand us until they have the same thing happen to them. This disease always baffles me. I had a surgery when I was 15, and two bad accidents to my right leg as a teenager. I never had any blood clots, but I was always tired and wanted to sleep a lot. It wasn't until I had the third accident to my right leg when I was 35 that I got an extensive DVT and PE. Then I was diagnosed 6 months later with APS. It must have been raging even more when I had the DVT/PE, because my antibody levels were very high at 98 positive; even six months after I had the blood clots. I had another test two years after that and my antibody levels were 85 positive. So they are still high. I have not had any recurrent clots, as I'm currently on Warfarin for life.
That is as I understand it too.
Iv got APS, and lupus. My mum I believe has discoid if not full lupus, with dvt. My daughter had DVT, nearly killed her, but only the one, thank god. But has not had any follow up. This was nearly 11 years ago, none since. Iv been free of dvt's.
Now I wonder if you have found an APS-doctor? Usually it is a Rheumatologist who also knows about Lupus (and understands the differences) and the other "cousins" like Sjögrens and Thyroid-illnesses. It is exstremely important to get this Specialist!
I also wonder if you or your daughter has tested for APS (3 antibodies you probably know already) or were you diagnosed by symtoms and what were the symtoms?
We need to be properly anticoagulated with this illness. We do not bleed from Sticky Blood (APS) but clot or get even microembolies that are very difficult to observe on a Scan as they are so tiny but do damage all the same.
Best wishes from Kerstin in Stockholm
Thank you Kerstin, yes I'm pleased to say I'm under a Rheumy Prof. It was in their clinic that I was diagnosed with Sjogrens too.
Until v recently I hadn't realised what a devastating illness APS is. Iv managed to get to 64 without a dvt. But have the antibodies.
I confess I don't know what the 3 tests are I have been so confident in the Rheumy that Iv left my care to them.
I will however encourage my daughter to get tested.
Thank you for the info.
Do you want to tell me what drugs for your APS and Sjögrens you are on? So you have got APS Lupus and Sjögrens.
If he is a Professor in Rheumatic illnesses he should know what APS is about - too thick blood. Many Rheumatologists do not know APS very well though.
I always tell members to read "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about all the different symptoms with this illness and how it is to live with it. Also excellent info for relatives to understand what we are going through. It is written some years ago so the latest oral drugs are not there but the same symptoms we have today ofcourse. A very good book indeed.
I have found that knowledge is power! Good Luck
Kerstin
Hi, I'm not on any drugs as Iv had no dvts.
I'll look up the book and read about up on it.
Everyone comments that my blood is almost black, nurses and such like, I think I must be v lucky not to have anything happen ...yet.
Thanks for the info.
Hi Linda,
Yes, when I read that book I understood that I had to do what the doctors had told me: to start Warfarin. I , when reading the book, understood that I had APS.
I had then been on Baby-Aspirin for some years but that was not enough. Aspirin is not an anticoagulation-drug.
Do not wait too long to get the book and I think you should have a talk with your Professor about your 3 illnesses that prof Graham Hughes name "cousins". They are treatable. Perhaps you will find out that you have only 2 of them.
I would like very much to hear how it goes for you now.
Kerstin
Hi Kerstin,
Just a quick question. I've just been told that because I have APS, recurrent DVT's, PE's, & Thrombosis. I will probably get Lupus to. My mum has lupus, and I know APS and lupus are of both the same family. Is this true??
Regards
Tina
Hi there,
I have learnt that APS, Sjögrens and SLE (Lupus, not Lupus Anticoagulant) are "cousins".
I do not think that even if your mother has Lupus you may have it but this is a question that not iven the Doctors know.
My Rheumatologist says that as I have a bit of dry eyes it is possible to have "pieces" of it (In my case Sjögrens) . We have to have very good Specialists of these illnesses who understand that it is not so easy to decide about a diagnose as they go hand in hand and are "cousins" and the antibodies go up and down. My Specialist is very good at SLE (Lupus) but also APS and probably Sjögrens.
This is only an answer from a woman without medical training.
Best to you from Kerstin
Hi, Kerstin,
Forgive me if this message seems a bit confusing, I'm having a bad day.
I was diagnosed with dry eyes when I went to the opticians, she sent me straight to the hospital and because of all of my allergies, they can't find one that don't agree with me. I had a patch test done before I was diagnosed with dry eyes, one of the results was no cosmetics, inc creams, mascara, just water, so my eyes fill like grit in them 24/7. So all I can do is sterile water, and not to share anyone's flannels etc (which I don't anyway because of the soap powders), yes!! I'm allergic to soap as well). It cost me a fortune trying to find something to calm my eyes .
It's effect me bad because I love to paint, and I'm finding it harder now, if I'm out and put a good pair of sunglasses it calms it slightly, but I can't put them on indoors. Have you any suggestions?
I was also told that APS and lupus go hand in hand, I was told this by my dermatologist because I have raised patches on my face (which are new), but the other patches he told me to keep an eye on it as it could be the start of lupus. (This was quite a while ago), and as you know, my mum has Lupus, with many other autoimmune disorders.
I'm glad this site has really helping quite a few people, it's a shame that there's no groups around for people that have the same sort of thing, plus you would not feel so isolated.
Sorry for going around in circles a bit, but I find I do now, I used to be so literate. (If thats the right word),
Again Kerstin, thanks for listening to our problems and sharing your advice. Even when you have it yourself.
Again thank you.
Kind regards
Tina
Hi Tina,
I have read that you wanted to start a group for APS (Lupus also?) some time ago. I think you should do that as you live in London. You could help eachother and you could find out more for yourself. I guess you have read the books we have been talking of here. "Sticky Blood Explained"by Kay Thackray is one.
You live in London but i do not remember if you have met with a very good Specialist? It is very important to have a Specialist who really understands!
If not you should look for one as you have so many allergies also. Is your Warfarin level ok? I guess it is as you write such good English (I say as a Swedish woman!). I mean when the INR is out of order you can not write at all. Not think at all.
You say you love to paint. I guess you do not mean paintings (as I love to do) but your face.
Kerstin
Hi,
I love to a actually paint. When I first became ill, around 20yrs ago I began to start a art portfolio course up to BAHons in Art & Design. But I became very ill and had to pull out. Art is something that keeps my joints supple, but I'm finding it hard but I push through it. I also have exhibitions with friends, and I have a painting that as been chosen for healthy eating at Hackney hosital.
(A picture of healthy food in a heart of a heart. ).
But to start up a group for APS, (I never know how my health is from day to do, but if I do, I would need help. I have yet to get the book, (Iivevonly seen one for £105), I cannot afford that, but I don't think is the same one your on about??
Thank you for all of your advice. If you help, I would be grateful.
Kingd regards
Tina
Do you mean "Sticky Blood Explained" by Kay Thackray? Yes that is the book I always speak of.
So you have got a painting of healthy eating chosen by a hospital. That is great.
As I live in Stockholm I can not help you. I am myself trying to restart my painting. I had to stop in 2005 as my intellect could not focus and I saw double etc etc. Perhaps I will restart but this time I want to paint clouds and beautiful sunsets. I live high up with a fantastic view for several miles....
Good luck with everything!
Kerstin
Hi Kerstin,
Firstly, somehow, I've got 2 accounts going on here, Firefoxie 007 and Firefoxie, they are both myself, I don't know how this has happened????
As for my art, I get the same, double vision, but it's been a bit of a bonus for me, my work is one completely different, the doctors told me not to give it up, it makes yours eyes (within time), learn how to adjust. It was frightening at first, but with these glasses that have the glaze protection, (it helps with the dry eyes too), as I said, it's completely changed my art. I can only do it around an hour at a time, but if you slowly start off, you'll be amazed what you can achieve. That's my only luxury in life, and it's great. I would go mad without it. If you like sunsets, try at first by using a sponge so it don't put a strain on your eyes. I would use anything to made things easier. I was shocked to be chosen for the Hospital (it's not my hospital I go to), I think I was lucky. If you have any painting that you have done in the past, it would be great to see them. I have a collection of the "past and the Present", they are completely different.
As for the book, it's was written by Kay Thackray, but I'm almost sure with the same title, I look on Amazon, I could not believe the price of it.
Good luck,
Tina
Hi Firefoxie,
I have it in pocket.
After Warfarin I do not have any more doublevision or Vertigo or loosing the sight on my right (lower half !) eye for a couple of minutes.
Warfarin has been my lifesaver but I must have it at almost 4.0 in INR and stable and that is why I selftest.
I think we are very spoiled here in Sweden with our Health Systeme but most people does not understand how lucky we are to live in this country. I do not know anyone here in Sweden (except for one woman) who also has APS.
I use "Systane ultra " eyedrops for my eyes. I need some sort of oil which they give. From the US.
Kerstin
Would my GP prescribe me Stystane oil to myself, and is it available in the UK?
Tina
I am sorry I do not know. It is my eye-doctor who prescribes it. It is called "Systane ultra". He told me there is some sort of oil that my eyes need but as you are allergic to so many things I think you must ask your Doctor about it first as it contains also a small amount of preservative.
Kerstin
I've tried so many that I have lost count. But I've not heard of your one. I was never ever I'll, no allergies,I worked 24/7, but made to feel guilty by all. I have to carry round an epipen, I'm on a small size of antibiotics for life. And I'm allergic to any antiflammtory medication or creams. No compression stockingsetc. I wonder why my body has started to reject things now. I don't why this is happening, could it be due to my immune system'. It cost me a fortune,.
Tina
Tina,
I do believe that if you could see a real Specialist of APS, Lupus and Sjögrens (usually a Rheumatologist) and have a serious talk with him and get a anticoagulation-drug that works for you (perhaps Plaquenil or LMW Heparin or even Warfarin at a higher dose) you could feel much better.
You live in London and you have seen good Doctors before I think I remember. Have a talk with one of them and ask what he suggests,
I wish you luck with your painting and feeling good again. You have tried very hard up till now.
Kerstin
Hi,
Yes I would love to start a group but I would not know where to start. I would have replied sooner, but as u can see, I have 2 accounts on here and both are colliding with each other.
If you can tell me how to start one off., (but do u think I know enough?). The more im learning, the more I'm getting into it all.
I managed to order the book by Kay Tharkery, (she has 2 books out), the 2nd version is "More you need to know about sticky blood', I got the first one first.
Again, let me know how I would start a group, I will have to start writing things down(although things are online,), my memory is terrible.
Thank you for you help.
Regards
Tina
Hi Tina,
You know I live in Stockholm and i am myself not at all good how computers work actually.
Hope you like the book "Sticky Blood Explained" which is very good and I also hope you will meet with a Specialist who can help you to be properly anticoagulated which for us is so exstremely important with our very thick blood.
Good luck with everything!
Kerstin
Thank you, I look forward in reading the book, it should be silvered today.
Again thank you.
Kind regards
Tina
So so sorry, just a quick question before I will leave you alone plus I'm seeing double vision.
Remember you suggested starting off a APS/LUPUS group, how would I start it off. I think there is a lot that would benefit people (like myself, but I don't think I have lupus, but the more I read the more I think I may have the beginning).
So what be the first thing I need to start of with??
Thank you very very much for listening to me.
Kind regards
Tina
I must admit that I have no idea at all. I sit here in Stockholm and talk to you via my computer.
I imagine it may be easier in England. I only know one person here in Sweden who has got it. Ask one of the Administrators perhaps if they know any groups.
Hope you can do something about your doublevision. I had that a lot before I was properly anticoagulated.
A Specialist and a drug to properly and stable thin your blood is the best answer I can give,
Kerstin
I get the double vision worse if my dry eyes are bad plus I've always had it even when Wafarin worked at the beginning.
I'm still waiting for the book, can't wait, mind u, I will have to give my eyes a rest. Will the book explain about all these different tests and what they mean.
If I keep getting thrombosis does that mean I have Thrombosis disorder?
Sorry Kerstin, you have been great.
I was diagnosed this year with APS by Immunologist after 3 possitive tests last year. He said Epstien Barr probably mono in college? Became active again. Also Sjogrens and Raynauds by Dr. Schofield. No one I know of in my family but my Dad had lots of health issues. My cousin has MGUS, also a protein problem. But she has her urine tested for protein. My family wasn't big on talking about health.
Hi and welcome Karen,
Hope you get a Specialist you too and read that book I wrote about that Linda should read. I am also tripel-positive like you.
Please tell us how it goes for you, new as you are. There are a lot of nice members on our site who knows a lot and we learn so much from our own stories about what we can do to feel good. Keep well.
Kerstin in Stockhom
Thank you for the welcome. Sometimes I feel invisible. I'm tired of being tired. Dr. Schofield put me on a statin and clopidogrel for coronary atherosclerosis. She is trying to get my blood pressure down. Then a patch that my ins. won't approve. Then Hydroxychloroquine for joint pain and Sjogrens. But now no one to follow up with. I have an appt with new PC Aug. 9th. Mine won't even look up APS. He needs to retire. She took me off Lyrica also. My body doesn't know which way it's going!
Hi,
I don't know what is Lyrica, what's it for? It's sounds more like the Material, as I can't wear anything that has elastic, and many other allergies.
Hope you don't mind me asking as we're all in this together, the more we know the more we learn.
But it does sound as if you need a doctor that knows more about your medical problems. Mine had never heard of APS but she did her homework, so now if she finds that something comes back in my blood or something she has not got an answer for, she sends me straight to the hospital.
Good luck and let me know how you get on.
Regards
Tina
Lyrica is a med used for keeping fibromyalgia in check so not to flare.
Thank you, my daughter suffers with fibromyalgia, I'll have to see what she takes, I know that she takes a few but one of them is that she only has one a week, but I'm not sure what that is for. She suffers with APS only in pregnancy then it goes, APS it's a very complexed disease, the more people are telling their own experiences, the more we can learn about all types of autoimmune diseases.
Regards Tina
Hi again, I guess you have read what APsnotFab has said about Lyrica.
She knows this illnesses we have here very well.
I recognize that name "Lyrica" but I do not know if I may have had it myself or someone else. Anyway it has a very negative sound.
I can tell you that I also had very high erratic bloodpressure which a Professor tried to get down. For some of us high bloodpressure is a symptom of APS and now after 5 years on Warfarin my bloodpressure is ok but still I take the medication that did not help before Warfarin.
I have now pulmonary hypertension and leaking heartvalves which is also a symptom of APS. So work on your APS and get a Specialist! That is my advice.
Kerstin
Those are dinosaur doctors. lol
Hi when I was testing apl positive (so no firm diagnosis) I was told it was not genetic but did tend to run in families. I think one of the problems we have is that it was only discovered in the early eighties so comparatively "new". I am now diagnosed with Antiphospholipid Syndrome following a PE after Bariatric surgery almost 4 years ago which presented itself as a stiff neck on waking. Following treatment at my local hospital Guys looked at my xray and discovered scarring from several previous clots which on reflection I find pretty scary so any pain should be investigated because we are not all the same and do not necessarily present in classic textbook fashion and can be hard work trying to get some medics to start thinking outside of the box!
Hi,
I'm surprised how many people don't know much about APS and other autoimmune diseases. Like myself, we are left to find out about it all ourselves. I find that there are to many chiefs and not enough Indians (as they say). Even down to the anticoagulant clinics, their knowledge of these diseases, (which I presume they would know) are not fully knowledgable. I know most are just to check your INR, but in my clinic, they seem to cater for quite a lot of medical blood disorders. Unfortunately for me, my clinical nurse left, and she was excellent, if I had any questions, or if she was worried, she was on the phone, got me into hospital and had treatment. Now she's gone I was lost in the system and was left untreated for over a year, now I'm in a worse state. All these other autoimmune diseases are new to me, and I've got so many other elements without a name. They use me as a medical Guinea pig or a patient that the doctors use for their medical students.
I'm glad this site has given me a more info.
Thank you
Tina
Hi Dobiedogz,
You have not yet met with a Doctor who is an Expert of APS. Do that!
First of all you must see to it that you have your bloodpressure down. You say you are breathless.
I can tell you that before Warfarin I had very high erratic bloodpressure and a Professor (not an Expert of APS) put me on very good drugs for my bloodpressure. Then they discovered that I had pulmonary hypertension and leaking heartvalves, but I was not breathless.
Both high bloodpressure and Pulmonary Hypertension are severe symtoms of APS.
I finally started Warfarin (should not had waited so long but I did not like the idea of ratpoison). It was first after I had started Warfarin that my bloodpressure was normal.
After anticoagulation with an INR up to 3.8 I feel fine. They always ask me if I am breathless but I am not. I still have Pulmonary Hypertension and leaking heartvalves and take my bloodpressure drugs like before but I feel ok and are not breathless.
Personally I believe that anticoagulation (Warfarin is good for APS if if you can handle it and selftest) is the answer to this illness.
Kerstin
Hi Dobidogz,
I hope u get sorted out asap, like myself, I went to my GP with a long list of problems, luckily she is a great doctor but she unaware what other symptoms I have she puts down to either hormonal, or another symptom of APS which I know that it's not. I am under a very good Dr at the Uch in London, she is brilliant, and even some of my elements infuse her. I was on wafarin first, still got clots on an INR of 4.2. Then she put me on riveroxaban and my hair fell out, then back on warfarin, more hair loss, then another PE, then put on fragmin twice a day for a year (I was lost in the system, as I've said before), back on warfarin, then another clot, back on fragmin, but Dr Cohen from the Uch said that she don't think the hair loss was from riveroxaban, so I'm back on that.
I still get most of your symptoms, and at a loss. Because so many autoimmune diseases are in our family, all under different doctors, like you, it's so confusing.
I had to see a dermatologist which was a good help, but because of funding, I'm not a priority. and the pain management team are also under staff and been waiting for over a year.
I hope, as I said get help, see if you can change doctors if your not happy with yours. We are not doctors, we can only share our problems and hope that people can help, like Kerstin, she is brilliant, she has given me a lot of help.
Let me know how you get on.
Kind regards
Tina
Before APS I had a low bloodpressure.
The professor (he was not a Specialist of APS) gave me 3 very good bloodpressure-drugs (good also for the heart) but it was not until I started Warfarin that the erratic bloodpressure calmed down. I still have those bloodpressure-drugs. I know we are different as some have other diagnoses also (I am primary APS).
Some of the symptoms you describe are similar to those of APS.
Take care
Kerstin
Hi Firefoxie007, I am APS diagnosed (LA positive only), discovered after a pregnancy problem (premature delivery due to HELLP syndrome). No clotting issues or major symptoms currently (no meds either). My mom has skin Lupus (and possibly systemic Lupus). Not aware of any other relatives with autoimmune disorders. I did have glandular fever when I was a teenager and also migraines in my twenties and early thirties. So to me it seems, something is in the genes and/or changed in the genes, but it needed a special event (pregnancy in my case) to come up with the major symptoms.
Hi,
It's seems that APS is part of a wide Spectrum of autoimmune diseases, and it also seems by all the response that this is a complicated issue as so many people have different symptoms. Doctors that don't understand just brush us off as though we are making things up.
So yes, there is a lot we dont know, and I'm so pleased that this site has taken off really well and I hope that we are getting to understand a little bit more, I've a lot to learn as I've got many elements that has started to make more sense since being on this site. So I'm hoping that we can carry this on. The more the merrier.
Thank you everyone
Tina
I've never knew that pharmacies could check your INR? Around my area it's not heard of and I live in the centre of London (2klm away). Even my doctors don't do it, yet they do minor surgery. Have their own pharmacy, and other different clinics. But then again, I think I'm the only one with APS in my surgery.
It's a good idea, esp for people that have a stable INR.
I have my own machine, and it's so flimsy. The one they used when the machine was at its experimental stage, the machine (although very heavy), was always accurate, never went a mark either side of your INR, but this flimsy thing, is made cheaply, it's given me a couple of wrong INR readings, I know it can differ by a mark, but the last one was way off, but it was corrected by the hospital. I had to pay for my own, but there are quite a few that got theirs paid by their surgery. Now I'm on Riveroxoban, again, you don't have to test.
Tina
Hi,
Thank you, sorry I've just seen your message.
I will have a word, she suffers badly with her hands, they stiffen up and they are so painful see can't move them. She also suffers with other problems, I will check with her. My mum has a very rare autoimmune dieasease, I know it's got 4 initials staring with C, she has no reflexes, she cannot feel her feet at all, and if she looks up she will not know we're her feet are and would fall. She used to have 12 bottles of a substance that is extracted from the blood every month, but it's no longer available, and is now on a substitute, which she has every 2weeks, but she us not so steady on her feet.
So it seems in our family that there is some kind of autoimmune deficiency, also 4 of us have under active thyroid.
That's a great idea. I'm a wheelchair user, and there is no order in the hospital clinic just for the anticoagulant patients, we are all mixed in with all other patients,.
The anticoagulant clinic now has fulling into the bracket of cut backs, so like a big hospital like Uch, u would thing that would have kept their own blood clinic.
Tina
I am on Plaquenil but generic. I have forwarded my email and hopefully she can get that up and running soon. But that sounds like a huge endeavor. I looked up the book on Amazon. Just need to order it. Thanks for info. Karen
It is all in our heads. The sticky blood runs through our heads daily! lol
Now I wonder if you are Lupus Anticoagulant?
For many of us (do not know how many) the fingerpricktest is not the same as a blood-test in the vein.
The vein-test is the reliable test (the real value of your INR at that moment). When we cheque the vein and the fingerprick-value it must be within I think 4 hours to be reliable.
For me (I am tripelpositive incl Lupus Anticoagulant) there is a known difference between the two blood-tests of my INR between 0,7 - 1.1. The machine-test at home has the higher reading (0,7 - 1.1) BUT it is always THE SAME difference with a discrepence of 0,3 - 04 (OK according to Specialist and hospital).
I checke my difference every two or three month at the hospital as i selftest every second day at home. This is the only way we are allowed to selftest in Sweden with APS.
Be sure you are not going round with an INR quite too low!
If my machine (fingerprick-test) shows an INR of 5.0, then I may have a real INR of 3.9. !!! With a high number on the machine the difference is bigger (perhaps 1.1).
I am not saying all of us are the same but the Doctors may not know about it and for us it is most important to KNOW AT LEAST.
Hope you could follow my trying to explain in English.
Kerstin in Stockholm
It is ok and it is not my life and you do what you want.
I talk about doing a doubletest to know that you can rely on the fingerpricktest that is is always the SAME DIFFERENCE with the test in the vein. It is the vein-test that counts! I have to doubletest every 2 or 3 month.
When we send our notes here several other people can read and that is good.
Kerstin
There are so many people past and present in my family that seem to have Hughes Syndrome/APS and or Lupus, there is a history from myself of glandular fever, plus with the children Mycoplasma Pneumonia amongst other things. I have several other diseases and I appear to have the most, but there again I had no diagnosis or treatment early on for my very obvious Lupus. MaryF
My mums autoimmune disease apart from lupus, which I hope to speak to her today and get the proper initials, but the doctors say it started off after her having radiotherapy after breast cancer.
But when I told her that APS is genetic, (now I know it could be something that triggers it off), but her reply was "You must of started it off". But I'm glad now that I know different.
Thank you.
Tina
Hi,
I hope you get your knee sorted out, like you I have other medical issues, wheelchair bound, have a full time carer. Life is hard as it, it would be great to have the doctors/GP's that took note also.
Again, I wish you get the answers you need, and again get your knee sorted.
Please keep in touch and let us know how you get on.
Kind regards
Tina
Hi, it's called CIPD (Chronic imflamory dmylinating polyneuopthy.
My mum has no immune system, so she catches anything, even if anyone has a bit of the sniffles, you can't go near her. Also it's an autoimmune disorder.
Have you heard of it?
Regards
Tina
I'm not sure, I know that she used to have 12 bottles of something, but then it ran out and it was no longer available. So they now have a substitute which she only has 4 bottles every couple of weeks. But it does not work as good, so now she is so unsteady, she can't feel her feet on the ground, no reflexes anywhere, her muscles are affected, when she had a bad attract, she lost most of her muscle reflexes, so she could hardly eat because of the muscle around her neck, so they had to feed tube her, she could hardly breathe, as u know the heart is a muscle, luckily she pulled through. What she is scared of is if the medication she's on now, (which is not working as it was), they don't know what to try next. But my mums a fighter, she has a good diet, goes out everyday, she walks, she will not use a wheelchair, she's unbelievable, nothing gets her down. It was only Christmas she fell, fracturedher pelvis in 4 places, but she beat it and now is walking around, no operations, nothing apart from physio.
Tina
Hi again,
Sorry to bother you again.
What my mums got, would it be connected to a autoimmune disease such as APS or any other blood disorders. My other daughtersuffers with under active thyroid, and she suffers with her legs badly. They are always swollen, they icth and blotchy. Her doctors don't know what it is. I really feel for her as she is in pain with them.
It's strange that all of the females suffer with some kind of blood problem.
My dad suffered with DVT's, his legs was always swollen, then he started to suffer with cellulitis, just like myself. Sadly he passed away, his autopsy was all his valves to his heart was blocked. He never ever suffer with chest pains, he was always active until the DVT's set in and so on. My brother has under active thyroid too. So out of the 5 of us, my son is the healthiest. But his still young, and that's the frightening thing about all this. My mum & dad was both in their 40/50 when things started. Mine started when I reached 40, my girls where around 25ish.
I hoping that my son don't developeproblems, his just 23yrs. His already had a leak that was in one of his values to his heart, and they caterrized it, his now fine. Myself, I was always active, always worked, until I was stuck firstly with a DVT's with my first pregnancy, then I had no more until I was around 35yrs, then downhill from then.
Would there be a genetic disorder in our family??
I know I'm asking for a lot, but I can't get no answer from anybody else.
Thank you
Tina
Thank you very much for all your information. When I've put this to doctors none of them don't seem to know enough about anything.
As for my dad, I requested a APS test, (he was in ICU) at that time for a hernia. The doctor replied "the test cost to much and we do not do that test here". I found this really odd. I also asked his GP, he said that he has not got it, but I told him that he had not been tested, but he still said that he hasn't got APS. (He was just a locum and did not know my dad very well). He already had 3 DVTs on Wafarin, I asked again, but still did nothing about this. I then called him out as an emergency on the Tuesday, he said he would come and see him, unfortunatly he just gave him antibiotics, without seeing him. Sadly he passed away a few days later. That's when we found out about his heart, each valve was blocked.
I suppose that's why I want to find everything I can, as you said, to protect my family.
I'm only in my 50's and it scares me that I've got all these medical conditions, as the doctors would say "somebody in their 80's he would see with all what I have. But I've a clean diet, my cholesterol is brilliant. But there is so much I can do, the rest I have to rely on my doctors.
Again I thank you for all you info.
Kind regards
Tina
Thank you, it's still so painful, & the doctors could see me in a wheelchair.
I did say to my brother that we should take it further, but his like me, we can't handle anything yet, if it was not for my brothers wife, I don't know what we would have done. But I will try with my brother, I can't do alone, but my brother is waiting to go into hospital himself, he also have a back problem through the family. Both my girls, my brother, my sister, and myself. I had the operation, but my brother has put it off, now he can hardly walk. I had L4L5S1 discs which now has left me with, lumber facet joint disease, plus othe problems with the back. So all together,I'm really fit able and ready to go, lol
But thank you for all of your advice.
Kind Regards
Tina
If there is anyone that lives in the north London area, near Highbury. We could start of a awareness group and meet for coffee. It would be great to meet other people with any of these auto immune diseases, (APS, people that's had DVT's &PEs without APS. Thyroid suffered, or any with auto immune disorders.
Let me know and let's see if we can start off this group.
Kind regards
Tina
Never written before but find this site so informative on APS I was diagnosed in October after a blood test came back positive. I had a stroke in July 2015 after numerous tests it was found I had APS so could then be treated. I'm taking warfarin and have been "in the zone" for 2 months Although given a leaflet I have found it difficult to actually find information but now I have thank you
Hi,
I was in the same position. I've had APS for quite a long time. There was no information, I could get only what was online which was very minimal. My GP knew nothing about it, also my doctor at the hospital (she is one of the top doctors of APS), she is so busy that it was impossible to get any info. Until I found this site. I have learnt so much, even to the point when things was happening to me eg, tiredness, memory loss etc, I found it was a part of APS. (Some people don't get all he syptoms, unfortunatly I do).
I glad you have found this site, and I hope that many others will too.
Good luck.
Tina
APS is difficult to explain to people, I get all the symptoms aswell but not all the time, I can be fine for weeks then I'll take a nose-dive and be "off it" for no reason, but at one time I was "off it" for weeks and OK for a day so I just go with it
I wish I could have a minute without any of it. But life carries on.
Tina
Do you think it was specifically the HRT or the menopause ? Interested to know as I'm 2 years post menopause and it's "all happenin here" and no HRT. It seems that, unless people have had clots, many aren't diagnosed with Lupus, sticky blood etc until peri/post menopause. I believe that oestrogen protects against heart disease up until menopause and then in the age group 60 ish plus, the incidence of heart attacks and stroke in women rises quite sharply. Suggests it's having an effect in blood vessels.
Hi,
I don't suffer with any menopausal problems, I've been very lucky. I've got a mirena coil which needs to be removed as I've had it for 8yrs now, but I only reason I have the Mirena coil was to control the bleeding. As for the patches, even if I had to go on them after the coil is removed I would not be able to have HRT patches as I'm allergic to the sticky substance that adheres it to your skin. I do suffer with memory loss, I have to write things down now, my memory was great before APS, but I put it down with early age dementia, but my GP laughs, and it's got nothing to do with it.
I look forward from hearing from you.
Kind regards
Tina
Makes sense that people with APS would be advised against combined contraceptive pill and HRT. Another reason for attempting to diagnose as early as possible. Did you have any APS symptoms before 50?
hughes-syndrome.org/self-he...
Looks like it can be genetic, but as many folks are saying, there's often a trigger required to activate the disease process. So some people might have the antibody but never have any symptoms. Interesting as my Mother (80) has quite a few of the same symptoms as me, but some only appeared in the last 10 years. She had her gallbladder removed at 70. Of course as you get older everything just gets put down to old age and GPs are even more reluctant to do anything except prescribe statins and antihypertensives.
I was told it can be genetic, but since being on this site, are
Hi all.
Is there anyone that lives in the north London area, Islington, Camden etc and has APS and want to be included in a help group. Please let me know because as you know, there is not enough knowledge with our gp's and the anticoagulant clinics.
Kind regards
Tina
Multiple Sclerosis
Lupus anticoag results
Seizures
