My story - I have just found i have APS

[Wenz15]

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?

[putterbunneh]

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

[MaryF Administrator]

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

[jessielou]

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

[evie47]

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.

[Wenz15]

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!