Sticky Blood-Hughes Syndrome Support

Never give up!!

Hi there

I am new to this site but I thought Id share my story.

I ve been living with this nasty disease since being diagnosed with APS in 1999 after I got a DVT following taking the contraceptive pill for around 2 months. I had put up with tiredness and headaches prior to this for sometime. I was then warfarinised for 6 months, and then given the choice by doctors of baby aspirn or to continue on the warfarin. I chose baby aspirin. I was told then that I had a 30% chance of developing Lupus later in life. All went OK for 6 years until 2005, (after a big night out) ended with yet another DVT in the same leg :-(( ...and from here on my pregnancy troubles also started.

2006 - We had a stillborn @ 21 weeks with preeclampsia, and liver infarction...very sick indeed and close to death, despite being on 100mg clexane daily, and baby aspirin.

2007 - miscarriage @ 11 weeks. I was shattered again.

Towards the end of 2007 I was diagnosed with the double whammy SLE, I was started on plaquenil, prednisone, aspirin and 70mg clexane twice daily as soon as I became pregnant and to our surprise the pregnancy went like clock work and we had a beautiful boy @ 36 weeks in 2008...YAY!..all very normal and healthy.

2010 - another miscarriage at 16 weeks baby very very small. Was all genetically normal as I had a CVS. Same combination of drugs minus the prednisone.The lupus was definetly "active" at this time...and I was very angry that the docs didn't want to put me on the prednisone like before.

July 2011 - we have been blessed with another success ...following the same regime as the one in 2008....another baby boy born at 35 weeks...who is now 3 weeks old and very healthy. The prednisone I feel was a critical drug in my cocktail.

My heart goes out to all who have had loses..they are devastating events that stay with you forever. I was told by a doctor to forget it, but I was determined to keep trying and I got another opinion. From reading peoples blogs and symptoms I suspect that undiagnosed lupus is complicating their pregnancies even further.

Stay positive, my thoughts and big hugs are with all of you!!

Linda XXXOOO

3 Replies
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You have been through a lot with your losses, I was fortunate to have had both my boys before 'it got me', I feel so much for you ladies that go through through what you have described, keep possitive and well hun, congrats on your little beauties! :) Sue xx

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You are so strong to keep trying. Congratulations to you and your family.

Take care

Tx

Reply

well done for keeping posative and congratulations

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