Any advice would be much appreciated!

Hi all, this is my first post ever to any type of forum. I was diagnosed with APS in July 2015, sort of by accident. My primary physician was VERY thorough and tested for a bunch of stuff during my yearly physical. Two clotting factors came back high so I was referred to a Hemotologist. After having the blood work done 12 weeks apart, I was diagnosed with APS. My Hemotologist prescribed a daily dose of 81mg aspirin. I should mention that I also have an anxiety disorder with panic attacks so of course I have a tendency to worry that I have clots. I should mention that I have NEVER had a clotting event ( PE or DVT) nor have I ever had a miscarriage. So I guess my question is, how many of us out there have this diagnosis but never have a clot?? Perhaps I should mention also that I am 35, female and a smoker....I know, I know, I need to quit! Any info would be great!

25 Replies

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  • Firstly, welcome, secondly where are you located?, and thirdly, you have a very good doctor there, lucky you. Not everybody needs anticoagulants some get by on Aspirin, outside of pregnancy I get by on Aspirin and a few other things, although I am aware that could change in the future. It is better to have a diagnosis rather than not so. I should think that your doctor will continue to monitor you. It is a good idea to understand the full symptoms, but please do try not to worry, the charity carries very good information: hughes-syndrome.org/ We are here to help and will do our best to reassure you. MaryF

  • I am originally from Long Island, New York, but am currently living in Nebraska. Yes, I'm greatful that I have the diagnosis and have started the low dose aspirin therapy BEFORE there was an "event." I'd like to think that being proactive rather than reactive is better. It's so hard with my anxiety issues to NOT think every pain, cramp or whatever ISN'T a terrible little clot floating along inside me.

  • Some people find that learning relaxation exercises via a counsellor or something like Mindfulness can help.... Keep happy. MaryF

  • Hey Mary,

    I wonder how the docs decide what you need re meds? Do they actually measure the clotting rate if that makes sense?

    I am still sure my health issues related to glucose and I have been more unwell Since on clopidogrel which seems strange!

    Hey Jess

    I am going through diagnosis at the moment too and I totally understand your anxiety. I'm finding it very tough but I have made a deal with myself to stop looking for thinks and to deal with whatever I am faced with at that time. If I drift off and think I can scare myself to bits so i try to breathe seven counts in and eleven out and it brings me back to now. It's a mindfulness technique as MaryF mentioned x

  • I'm a BIG fan of deep breathing/breathing through the diaphragm. It's amazing how much it helps. I'll often sit in a yoga pose and repeat over and over "I'm ok. I trust myself to know when something is wrong." A little tip from my therapist. My problem now, it that my upper back and upper chest have been sore for a few days now with a little bit of a cough and sure enough.....my mind goes to blood clots, heart attack, you name it. I've tried explaining to my boyfriend that anxiety has NOTHING to do with logic. Logically, I know I'm ok. I'm still here!

  • Do have a look through this page: hughes-syndrome.org/self-he... Medication is decided on history and current status etc, it is individual. It is important to have a doctor who understands the condition. MaryF

  • Thanks Mary x

  • Hi Jess.thought I was reading my own post first if all.yes mine was found after blood tests and I too not had any clots etc.mine was little sort of jerks of body n while walking and memory.I do have RA +Fibromyalgia too so I think it's called secondary APS as have another auto immune disease. You can't help but be worried.I don't think it's not normal not to be but you can't really do a lot about it but eat healthy and try to do bit of exercise.Your main help would to try and stop smoking. I am now on warfarin for life.I hope its just aspirin for you.

    Try not to worry too much as you will make yourself more stressed out.

    Come on this forum anytime.You meet a nice friendly bunch of people ready to help.

  • Hi,

    May I ask why what do you mean when you say that you were put on Baby-Aspirin "by accident"? In fact there are several people with the antibodies and they never get any symptoms.

    So if you have not had any symptoms (you have read on this Charitys website of course) you should not be worried at all and then you also have Baby-Aspirin as sucurity no 1 (so to say, I am Swedish).

    As Mary says: "It is important to have a Doctor who understands the situation" if there are any symptoms!!

    Keep well

    Kerstin in Stockholm

  • I meant that my APS was found by accident. Clotting factors are not routinely tested for in yearly physicals unless there has been some sort of clotting event. When I first saw the Hemotologist, he suggested I start the aspirin, because why not? It wouldn't hurt if the positive anticardiolipins were just a fluke due to infection or something like that. When I was still positive 12 weeks apart he just said to stay on the aspirin. I'm assuming because I've never had a clotting event and my numbers were in the low/medium positive spectrum, warfarin or heparin were not warranted. I should also mention that my lupus anticoagulant was negative. If I had been triple positive, I'm sure it would be a different story.

  • I would say that a lot of people across the world fine tune their care by learning about doctors more local to them via other members, but I will also add this in, as there are some very useful names on it: apsaction.com/

    MaryF

  • Yes, here in Sweden they do not take all three antibodies either at a routine yearly cheque. So your Doctor took them "by misstake" and there they were. I am triple positive but they gave me only Baby-Aspirin in 2002.

    The symptoms of APS can make you feel "peculiar" to begin with. It is good that you know this site and the symptoms.

    Sometimes it can be better we do not know that we have the antibodies.

    Keep well.

    Kerstin

  • I know. All this information readily available is both a blessing and a curse!

  • I stopped smoking 30 years ago. How? 1, I had pneumonia. And I highly recommend getting pneumonia as an effective way to stop smoking. 😉. 2, I would indulge in imaginary cigarettes. Wherein I did all the physical gestures of smoking. I would pretend to open an imaginary pack, pretend to discard the cellophane wrapper, open the pack, remove one cigarette, tamp the non-cigarette down, etc. Going through the physical gestures really can fool your brain --a tiny bit. The rest is of my recovery I attribute, again, to the pneumonia.

    Don't go that far.

    You have autoimmune antibodies. That means you have a crazy immune response that is constantly looking for a potential enemy so it can draw its sword and say ( like those old Pepe L'Pew cartoons) " en garde!" I suggest avoiding as many extraneous chemicals as possible in todays world which means, of course, giving up the cigs.

    I've been diagnosed with Hughes for 16 years now after DVTS, TIAs and mini strokes.

    Not a week goes by that I don't , at some point, wonder if I had never smoked perhaps I would never have developed Hughes.

    ( forgive the rant, but like most ex-smokers I get a bit passionate about this.)

    Gina in West Virginia

  • Good for you, as usual! MaryF

  • A compliment from you is like one from on high. Thanks. Youve made my day ( which has been rather busy, so again -- Thanks.)

    Gina

  • Same as you. Was diagnosed with APS but never had a clot. Did have signifiant infertility issues. One birth, but premature labor, and a very small placenta. Kind of sounds like blood supply issues, but never confirmed by MD. Do have issues with cognitive functionning and am permanently retired due to those. I am 48 Years old. I belette Dr. Hughes talks about having quite a few patients with no major clothing events.

  • Hi Danluc,

    Have you succeeded in finding an APS-Specialist now? I know you looked for one earlier.

    I wonder if you are on any anticoagulation drug at present? Your cognitive issues may well be symptoms of APS and need to be anticoagulated before you get a mini-stroke or DVTs etc etc.

    Have you tried to get a Heparin-trial to see if your symptoms decrease?

    Best wishes from Kerstin in Stockholm

  • I have seen a neurologist, which diagnosed me. He sent me to a hematologist. He said that since I had no major events, it could not be APS. Finally got to see a rheumatologist who was suppose to know more about APS, but said he wasn't sure. My test results were 36-37. (Normal is less than 18). Didn't think the numbers were high enough. So, I decided then that I was tired, frustrated, and miserable, and decided to live with it. I am on low dose aspirin, and learning to live with it. It is sad but I am now focusing on the good things in life. I was too consumed before. I might decide to see Dr. Hughes in a couple of years as my husband and I are planning a trip to Europe in 2 years. Thanks for checking up.

  • In fact you do not know if you have got a diagnose or not.

    Neurologist says "yes", Hematologist says "no" and finally Rheumatologist says " I am not sure."

    Keep well!

    Kerstin

  • You're absoluely right. I am living my life as a "yes". I may just check in with Dr. Hughes. Thanks

  • That is a really wise decision!

    Nice Christmas holidays to you and your family!

  • And to you.....

  • Hi Jess

    I too have been recently diagnosed with APS on the back of two blood tests - the initial one was picked up at a pre-assessment screening for surgery early this year - the next 12 weeks later. I haven't had any clots or miscarriages and was told by a haematologist that I didn't need any treatment until I did have an incident.

    However I have a whole list of other symptoms that I believe may be related to APS or the other auto immune conditions are that are often linked so my general practitioner has agreed to refer me to a rheumatologist in London and in the mean time has said that it won't hurt to take 75mg of aspirin.

    Do you have any other symptoms?

  • Sounds like we're twins! I was negative for both lupus and rheumatoid arthritis, but as I'm sure you know, that doesn't really mean anything. I have many autoimmune symptoms. My mother has lupus and thankfully has been in remission for a good twenty years but I vividly remember her flairs when she would be in so much pain. I have many of the symptoms she had when she as my age. I don't think she ever had a positive lupus test, but she had a doctor who believed her and listen to her and treated her as if she did have a positive lupus test. If I follow in her footsteps, I'll be a happy girl! She's 60 years young and feeling fabulous. what prompted the coagulation testing in the first place was easy bruising....even from just scratching myself, and very heavy/ clotty periods. As far as symptoms of other autoimmune diseases, there's too many to list! Add to that my anxiety disorder and panic attacks and I'm a real hoot! since starting the aspirin, my periods have gotten much better. The whole thing is a daily struggle. It really is. I try to get out of my head as much as possible...to keep my sanity, and try NOT to google every little ache and pain!

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