Okay so it was a bit scary and another first. I travelled down to London on the train, all by myself.  Well, I’m impressed even if you are not.  All on my own, by myself…  Go me!

I had an appointment with Professor Khamashta at London Bridge Hospital. He took my bloods last week to test for Antiphospholipid Syndrome.  They took sooooo many bloods off me (and over £600 and another £200 for the consultation) so I wondered if I would get a huge printed report with the findings?

No, I got nothing to take away, but Prof Khamashta was so supportive and very keen to make sure I have the right level of care. He said he would send me a report but I have tested positive for the three areas of Antiphospholipid Syndrome (APS):

  1. Anti B2 glycoprotein 1 IGG antibody - I am strongly positive
  2. Anticardiolipin antibodies – strongly positive
  3. Lupus anticoagulant - positive

So that’s it, it’s been confirmed again that I have APS. It’s nothing that I didn’t already know from the haematologist but at least he confirmed we are going down the right track of making sure I am treated with Warfarin. However, he wanted my INR to be in the 3 – 4 Therapeutic range, he said 2-3 is not high enough for someone with APS.  He also wanted me on Hydroxychloroquine (Plaquenil).  He said that warfarin alone will not prevent me from getting clots but I also need to take an anti-malarial tablet called Plaquenil.  He says it is known to reduce the risk of clots in patients with APS antibodies.

So I have some new info on APS and in some ways it’s nice to know that I have had another specialist check over my health and medication. I still feel very lucky in the way everything has happened and that I got a diagnosis relatively quickly.  In looking online at the support groups, many people suffer for a long time or don’t get the support or treatment needed.

Yup, I’m one lucky cookie and grateful for it.