I started treatment for Lupus today, unfortunately this wont replace the blood thinner I am on which will be for the forseeable future. The first line of treatment is actually the treatment given for malaria. On the other hand, taking xarelto does mean
I CAN NOW (officially) TRAVEL long distances!
If you google sle (lupus) it seems that I am so far out of the usual age range for this systemic auto immune stuff, although I was diagnosed with hashimotos which is another auto immune illness in my twenties. My age has therefore proven a challenge in getting this diagnoses, and I found that specialists who do not keep up with the current medical research confounded the diagnosis in my case - aka the rheumatologist I ranted about back in May. His suggestion of stopping the anticoagulant back in May could have exposed me to a significant risk of another DVT as the greatest risk of a recurrence is within 6 months of cessation when there are pre existing issues in the blood, which has now been shown to be the case. My new rheumatologist picked up that the Hospital did not do a basic test way back in February. She is gold - in great demand and a wait list of 6 months IF she accepts you as a patient. I got so lucky.
So 6 months later, I can honestly say that this DVT whilst scary and devastating at the time, and mucked up my 60th birthday celebration, has in fact proven to be a fortunate thing. :shock:
For anyone, the diagnosis for SLE (lupus) can take years. It is an elusive and challenging diagnosis because every person experiences different symptoms. My niece has it and she has completely different symptoms to me, although she had the same neurosurgery that I did and we were both aged 29 at the time. There are other similarities which I wont go into here.
The DVT in a highly unusual place exposed a pre existing life threatening health issue (colloquially known as 'sticky blood, Hughes Syndrome, secondary Antiphospholipid syndrome, Lupus Coagulant - I know so many big words now
), but in a place that caused minimal damage. It was a large DVT and had it arisen just a couple of inches higher, would have been in my brain. Now I know I have it, it can be managed and treated, but not cured.
Now, my next trip overseas is in 3 weeks. A doozy - Jetstar to Bali.........