Hi there :)

Hi folks . I am writing from Singapore . I was diagnosed with APS 2 years ago after 2 miscarriages. I also have endometriosis .

I came across this forum recently . Read many of the posts & polls here . I have to say you guys ( patients and doctors ) have a lot more awareness and knowledge about APS over in US/UK than this us in this part of the world . I have a lot of catching up to do .

My symptoms appear to be milder than what most of u have described. I take aspirin 100mg per day . I have joint aches , fatigue , recurrent miscarriages , migraine ( seem to have stopped after aspirin ) and severe urticaria . I have frequent subconjunctiva hematoma but my rheumatologist doesn't think it is related to APS , but it has reduced in frequency since I started aspirin as well . I was on clexane during my third pregnancy , and I have a healthy one year old girl now .

My questions :

1) any of u suffer from chronic urticaria?

2) my new rheumatologist suggested that I start on hydroxychloroquine . I have remained functional with my joint aches and fatigue so far . An inconvenience yes , but manageable still . Do you think I should add on hydroxychloroquine ? Does it slow down the disease progression ? I assume the disease will progress ?

Thanks for your time .

13 Replies

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  • Hi, Rheumatologists are the doctors that mostly know this illness best.

    I was on Aspirin 75 mg. They tried double douze 160 mg (did not make any difference). When I tried warfarin I was remarcable better. I just know that it is important to be well anticoagulated when you have APS. Sometimes it is a trial and error.

    Good luck from Kerstin in Stockholm

  • Thx Kerstin. How do u know if u are well anti coagulated ? I read that u guys test INR at home . My doctors are not testing me regularly after my pregnancy . They did not suggest home testing either .

    What did warfarin help you with that aspirin did not ?

  • Hi again, That is a good question. I test my INR at home so I know that. First you notice that your symptoms get better and that your lab vein tests are in range if you use warfarin.

    I am not a doctor as you know so no Medical advise. You can perhaps try that new Rheumatologist and see if she/he seems to listen to you and understand what APS is.

    Many people on this site know at once if their INR is too low and feel worse. Good luck.

    Kerstin

  • First Aspirin helped me. (4 years) with Auras.and lost sensibility on the right side of my body.

    Then I got worse (doubleseeing, Vertigo, sharp pain in head, lost my sight in one Eye. They suggested 160 mg Aspirin. (double doze) but it did not work. I decided to try warfarin and I could read again. Warfarin has suited me very well. Kerstin

  • Am happy that you found the best treatment for yourself Kerstin . Best wishes

  • Thank you so much. Kerstin

  • Hi

    Could anyone recommend any link re. as to how to interpret INR levels, please? Joey, I don't mean to hijack your thread ..xx Many thanks xx

  • We cannot help with this as everyones warfarin dose will be different in order to get and keep at a particular INR level. This is something you need to work with your Antcoag Clinic on.

  • iNR measures just one aspect of the clotting cascade-- the part which is effected by taking warfarin, ( brand name coumadin.). Warfarin doseage is dependent on so many Individual factors. While other meds are based on patient height and weight, warfarin is more random and varies with the patients metabolism, diet, hydration levels, intestinal absorption levels, liver function, -- and on and on.

    For so many years, even the blood test used to measure warfarin effectiveness was so individual that each lab's test results did not usually correlate with another. That's where the INR, aka International Normed Ratio comes in-- it allows patients and doctors to use a platform which is consistent from lab to lab.

    Other decoagulents work on other aspects of the clotting cascade, and the INR has no relevance to their efficacy. So, if one is taking heprin shots for example, there is no need for the INR because the heprin targets another portion of the cascade dose Heprin's effective dose however is not so random. You can, for example, eat whatever you like. While on warfarin you must be consistent with the amount of Vitamin K you eat each day,( as well as the amount of ' blood thinning' helpers such as alcohol and ginger.)

  • Because this is so complicated, that's why it is important to be under the guidance of a coagulation clinic, a rheumatologist or a hematologist. Good luck.

  • I just wanna add that I have joint stiffness ( I can't do most of yoga poses ) and cracking at knee joints since childhood . Will hydroxychloroquine improve these too ?

  • Hello and welcome and thank you for the feedback. A paper here originally presented in Singapore: lupus-support.org.uk/Crit.htm I hope you have come across the charity web page and all the information contained on there. hughes-syndrome.org/ There are names around in the medical world over your side of the world! lup.sagepub.com/content/18/... ncbi.nlm.nih.gov/pubmed/195...

    Regarding hydroxychloroquine the 'Plaquenil' is the brand stuck to both by St Thomas. and London Bridge, try and insist on this if you can. It is slow to work, many weeks to get it up to speed. It did not suit myself, but my teenage daughter is much better on this and Aspirin. I am glad to hear the Aspirin is making a difference. In response to your other question: ingentaconnect.com/content/...

    and just in case you have not seen this film:

    You will make many good contacts on this forum, we have members from many different countries.

    MaryF

  • Thank you MaryF !

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