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):
- Anti B2 glycoprotein 1 IGG antibody - I am strongly positive
- Anticardiolipin antibodies – strongly positive
- 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.