My story - I have just found i have APS

Hi - I have recently found out that i have APS. This has taken 12mths to get this result. In my first pregnancy they found a PE in my lungs at 32 weeks. I was in hospital until baby arrived and put on clexan twice daily. After bubs I was on warfarn until I fell pregnant again. I then injected myself twice daily with clexane and that pregnancy went find. I was taken off warfarn around 6-9mths after my second baby. A few months after that I started getting joint pains. Which got worse and worse as the months went by. Some days in tears cause every bone felt like it was broken. I also started to put on heaps of weight. No matter how much exercise I do and what I eat, it feels like every mouthfull is another kg!! I finally got to see a specialist this week who tells me I have APS. I am so pleased to finally feel I am getting somewhere after being to the doctors 100s of times. On Monday i start taking 20mg of methotrexate. Really hoping this helps. Has anyone had good results from this?

6 Replies

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  • Hi Wenz,

    Sounds as if you have been through a really tough time. Glad to hear that you now have a diagnosis at last. I haven't had methotrexate but hope it helps you. I'm fairly new to this forum myself and have found it a real help. I have found, together with Warfarin, Hydroxychloriquine seems to be very helpful for many of my syndrome's symptoms.

    There is a lot of information about APS on this forum and at the Hughes Syndrome Foundation site.

    Jen :) xx

  • Hi there, and welcome glad you have landed on here... and whilst they check you out, do let them take a look at your thryoid, as Professor Hughes regularly reminds both medical staff and patients it is a common trio of disease, Hughes Syndrome, Sjogrens and Thyroid issues. I too put on lots of weight and then found I had a slow thyroid, now it is more stable I have lost a bit. I am glad to hear you are on Plaquenil which suits so many people. All the best Mary F x

  • Hi hon

    Welcome and glad you found us, sorry to hear of your health problems and like so many of us a difficult journey to diagnosis, so glad your precious babies made it!

    Hopefully the meds will make a difference hon. Methotrexate is not something I've been on, hopefully others will be along to answer this! As Jen above one med I take is Plaquenil that does help!

    Take care gentle hugs love Sheena xxxxx :-) :-) :-)

  • Hi Wenz and a welcome from me too. You say you have been put on Methotraxate, Im assuming because of the joint pain. Have they also diagnosed Rheumatoid Arthritis?

    You also do not mention if they are treating your APS with any anticoagulation. Have they put you on any Aspirin or warfarin for instance? Joint pain and fatigue can be a part of APS or sometimes it is also a symptom of one of the trio of other conditions that often run along side APS - Sjogrens and Thyroid Antibodies for which Plaquenil is often prescribed.

    I really hope that you are under a knowledgable APS specialist now that you have finally got this diagnosis because the condition does need to be monitored carefully by Doctors with this speciality. If you need help being pointed in the correct direction for this please let us know. And please let us know how you are getting on. x

  • Was on Methotrexate for 2 years. Some side effects for me (maybe not for you) of feeling a bit sick. It did not work straight away for me, but did eventually. Make sure you have regular blood tests. I am not on Methotrexate now as it affected my liver. I am now waiting to see if I am suitable for another drug. Good luck on your new drug It does work well overall.

  • The doctor told me it would take around 3-4mths before i noticed it. He has also put be on folid acid which is meant to help your liver. Have just taken my first lot...... fingers cross it all goes well now!

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