Is aspirin enough?

Hi, I was diagnosed with APS this past summer and told to take baby aspirin once a day. I was finally diagnosed after experiencing 2 miscarriages (first one at 12 weeks and the second at 8 weeks) and having a normal pregnancy until the end when I delivered early because of preeclampsia. After my last miscarriage I have not been able to become pregnant. Since then I have been experiencing extreme body aches especially in my arms (feels like I have the flu), headaches, extreme fatigue, congestion and brain fog. All of these symptoms have progressed over the last 2 years and in the last 6 months it has become almost constant. My question is has anyone experienced this with APS? I do not feel better since being on aspirin. Do they only prescribe a blood thinner like Warfarin if you have had a blood clot? Fortunately, I have not experienced a blood clot. Thank you for any help to my questions!

21 Replies

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  • First of all welcome and Im so sorry for your losses. Do you have a Hughes specialist because it sounds like you need to get one. Aspirin is clearly not working for you so you will need to discuss the next options. You also need to get Thyroid, Vit D, Iron, ferritin and B12 checked as all of these need to be at optimum levels both for you to feel well and for medications to work properly. Thyroid issues not only run with Hughes but will also impede trying to get pregnant.

    We have a list of specialists in our Pinned Posts to the top right of this page. I would certainly go down that route before trying to get pregnant again. Please keep us updated as to your progress and if we can be of anymore help.

  • Thank you so much for your response! I have seen a rheumatologist and hemotologist who have both told me that a high anticardiolipin result would not cause these other symptoms. I have been tested over and over for thyroid issues and everything has come back normal. As for the other test that you have mentioned the rheumatologist ran them all and everything is normal. I am running out of hope as it takes months to get into these dr's and no one believes that I could be feeling this bad just from APS. Actually I have been told that most of this caused by depression. I am depressed but the cause of my depression is from how awful I feel on a daily basis. I am currently see a psychiatrist and am on antidepressant. I am going to the Mayo Clinic in a month. I am afraid that I am putting my family and husband thru a very costly and long trip for nothing. If they tell me that I am depressed or there is nothing they can do I will be putting us all thru this for nothing. Could APS be causing the symptoms?

  • The problem you have is that in the USA there are not many Dr's that do understand Hughes. In NY there is a Doruk Erkan MD if you are on the west coast I can give you another name. Additionally all the specialties will do their own thing so an obyn will not work with a Rhemy so if you are trying to get pregnant unless the Obyn has experience in treating the condition, you have a problem. Due to insurance issues you will also find it difficult to get anticoagulants without having had a clot which we find rather daft given that the whole point is to stop people or at least prevent them from getting one! After all Dr's have an oath of do no harm but then don't treat patients because they are so scared of bleeding which is ridiculous because they are treating patients with a clotting disorder so their blood is too thick! So that is why you must find someone who understands these issues. If your blood is too thick it causes all sorts of symptoms, then you will get anxious, understandably so, and then you are into a vicious circle!

    If I were me Id tell that lovely husband of yours to not spend his money at the Mayo but bring you on a holiday to London and see a specialist here who can do the diagnosis and then take back a plan to treat you to someone who will listen.

    As far as Thyroid testing is concerned, unless they have tested your FT3 and FT4, thyroid antibodies, both, then they have not really tested it properly. I don't blame you for feeling depressed. many of us have been through this and you just have to stick at it until you find someone who will listen. We are here to support you so don't give up.

  • APS can cause a lot of strange symptoms as APS can attack all organs. When we are treated we realize how many.

    I suggest you read "Sticky Blood Explained" by Kay Thackray. It is not a new book but she has APS herself and the symptoms are the same. A good book to understand APS and it suits also relatives very well.

    Also important to have a Specialist of APS to get understood and get the right treatment.

    Best wishes from Kerstin in Stockholm

  • I bought 'sticky blood syndrome explained' not for me but for my husband and family because it's soooooo difiicult to explain what is going on with me, they have found it so interesting and easy to understand, makes me feel better knowing this

  • Thank you so much for telling me as I like that book so much and I am always "nagging" about that it is a good book to understand APS.

    Some Doctors should read it also to understand us better!

    Thanks again

    Kerstin

  • Thank you both for your understanding and for giving me some options. I have felt very alone lately and it is so nice to hear that I am not the only one going thru this. And better than that that you all have experience with this and can give me guidance. I live in Colorado USA and would really appreciate a referral if anyone has one. I would love to come to London (has always been a dream of mine) but would like to start with finding someone in the US. Thank you again!

  • I have APS live in Texas and have exact same symptoms; for years they said it was just depression then possible lupus . I had a horrible experience with plaquenil so I am currently just on aspirin. The plaquenil worked when I had joint pain but nothing deals with the fatigue. I am seriously considering going to London I would go for any reason but this seems also the only way I am going to find real answers. Would appreciate any information about exactly how I set up a consult and with which Doctor . Most gratefully, Allison

    PS I am very close to Colorado please feel free to contact me

  • I live near London and i have aps the doctors here have put me on aspirin a few months ago told me I had a clot in my heart now they are not sure if I did the nhs service is going down the pan nowhere as good as it used to be so don't rely on england get a second opinion in usa. I am now on aspirin and have been told by a doctor here my life is a gamble,they don't know if and when I will get a clot,so I take each day at a time good luck to you

  • Who told you your life is a gamble?! Was it an APS-Specialist? What did you do when he said that?

    You live near London so I guess it would not be too difficult to somehow get in touch with a Doctor who is experienced in our illness. Usually a Rheumatolgoist.

    I wonder if you should be on something stronger than Aspirin as you have got a clot in your heart! Who told you that? Was it a Cardiolog? I wonder if you also have high bloodpressure?

    I think you should read about APS ("Sticky Blood Explained" by Kay Thackray is a good book to begin with.) because knowledge is power in this world of APS.

    I think you should put a question on our site as you should probably get good answers from our Admins and our members who know a lot of APS.

    Please take good care and stay with us!

    Best wishes from Kerstin in Stockholm

  • I have the same problem... with less syptoms. But till clot.... no blood thinners. Just aspirin. My problem is a lot of platelets aggregats. I hope aspirin is enough.

  • Have had no clots but all other symptoms and am on warfarin . I do have RA and Fibromyalgia so thought all symptoms were from them.

    Don't accept the depression route

  • Ihave fibromyalgea arthritis and aps and I am only on asprin they told me I WILL ONLY BE PUT ON WARFRIN if i have a clot

  • I also suggest reading the book "in the kingdom of the sick." This book explains the psychological ramifications of having a chronic disease and living in a culture that only understands accute diseases. Which would include the United States. You are not alone.

  • Firstly I'm so sorry for your loss, they only tested me for aps After my 3rd loss and put me on aspirin but no one actually explained my results. I went on to get pregnant 3 years later and had a stillbirth at 24 weeks as the placenta was just clots even though I had been on heparin injections from finding out- my obstetrician told me my lupus anticoagulant level was the highest she had ever seen and that there is little treatment available other than what I was on so the likelihood of having a baby is less than 50% and if I did it will be severely premature and could have many problems which now terrifies me as I'm pregnant again! You're so right though so little known in my area and although there are specialists not too far getting my doctor to refer out of her region is near on impossible- I have made her prescribe double heparin this time as it can only help but god knows what the future holds for this baby- I can only hope we have better outcomes next time. I also have sore joints etc but was told same that only If i had history of clots would they treat me.....sending positive healing thoughts for the future xx

  • Thinking of you too! I feel I have became so cynical thru all of this especially when it comes to pregnancy and babies.... but then I had my daughter (with problems but she was perfectly healthy) and there is still something magical and miraculous about it that we or even the best dr's will never understand or be able to explain. So I am trying to remember that even when the worst is probably inevitable I've still got that. Probably doesn't make sense but it helps me. I am praying for you and will keep you in my thoughts!

  • Aloha!

    I'm sorry to hear your story. I lost a baby at 8 1/2 mos....not diagnoses, then 10 years later, big clot in my leg....finally a diagnosis! Lupus, and secondary APS.

    Treatment is warfarin, aspirin, mycophenolate mofetil and aynthroid...

    I also have heart valve issues. So I see a cardiologist, too.

    I hope you get answees soon. And keep your chin up!

  • Have you also considered that you may have a double whammy? Have you been checked for Lyme Disease or Co-infections caused by tick bite. Do all three tests associated with Lyme Disease as Western Blot test is weighted differently in different countries or USA States. All the best.

  • Hi Ne27,

    I have a 3 year year old son but afer him I had two early miscarriages ( before 12 weeks) . After much pushing for tests i have been diagnosed with aps, but like u have never had clot so only on aspirin.

    I found that the something (I think the aps) has effected my fertility. After my first miscarriage I couldn't fall again, had acupuncture for about 6 weeks and fell pregnant - we did lose that baby as I was not on aspirin or even heard of aps at the time. After some recovery and more acupuncture to regulate my periods etc I fell pregnant the first month of try and now taking aspirin daily. I'm currently 15 weeks 5 days pregnant very worried, still doing the acupuncture (I'm too scared to stop) and I'm being monitored closely by drs.

    Hope this info helps and gives u something different to think about. Hope u get ur happy ever after.

  • Thank you for your reply. The doctors I have seen tell me when I find out I am pregnant that I will be put on Lovamox. I am staying on the baby aspirin until I get pregnant. Getting pregnant is the problem right now. Congratulations to you! I hope your dreams come true too!

  • Honestly have a read about acupunctures affect on fertility.

    Might be worth a shot!

    Good luck!

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