I thought I had primary antisphospholipid syndrome but now Lupus joined the team

I have been in hospital two weeks and I was diagnosed with SLE at the National Hospital of Rhemautic Diseases in Bath. The SLE affected my lungs and my kidneys, I'm know with treatment that includes Cyclophosphamide and Prednisilone.

I thought I had primary antisphospholipid syndrome but now Lupus joined the team.

I'm tired and a bit scared. I'm just drained of going again through another challenge a Stroke and a Heart Attack wasn't enough. I feel with this Lupus is like having an alien inside me that I don't know where it wants to attack.

I have to rethink my life again............

4 Replies

  • Hi Dani

    We all feel for you and are thinking of you..

    I'm glad that you and I are both near bath and we can go to the RNHRD, where they understand APS and where they are linking up with our 'APS West' group.

    Are you still in hospital or back home now?

    Dave x

  • I really feel for you Dani. I've had lupus for many years now, but after 2 DVT's & an MI this year, the docs think I have APS too. As if one illness isn't enough eh?

    Check out the St Thomas' site & FB page for lots of helpful info. I recently came across a lovely, positive blog on there by Claire Boardman. She describes these overlapping auto-immune illnesses as BOGOFs!

    Have you started you're cyclo treatment? I've just finished mine 2 weeks ago, & early test results are good. Although I've been told can take a few months to have full effect. So I am trying to be a patient patient, but this has never been my strong point.

    Hang on in there, & very best wishes to you. X

  • Thanks for this info.

    I have to keep positive though sometimes it's hard.


  • Hi Dani

    I have Lupus and APS - I have a kidney transplant too. I know exactly how you feel - sometimes it all feels like too much but you have to kick on... I know it feels dreadful and tiring and unfair but there will be something positive that comes out of it all - I promise. For me that was the understanding of how short life is, how precious it is and then the realisation that you should spend it doing things you love with the people you love. That may sound obvious but I was always so focused on achieving something that often these events got in the way of life...

    I won't lie, there are days when I feel a bit defeated still - I had my transplant 9 years ago and was diagnosed at 19 (14 years ago...) but there are more good days than bad. The most important thing is that you have a diagnosis - or even half a diagnosis, that means that there are people on your case, people that you can talk to (easier said than done I grant you but there nonetheless).

    Lupus is a toughie - especially on top of the APS - but there are many ways to manage it and let you get back to the important job of living life.

    The forum is here to help support you and answer questions and let you know that you are not alone. You can do this!

    Take care and shout whenever you need to!!

    Take care


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