I am new to this group but have been on lupus uk for a couple of months as I was diagnosed with SLE, arthritis, alopecia, Malar rash, back in Nov 16. I am 38 and live in Leeds and work for NHS England as a legal admin manager. I have recently being diagnosed with APS and just spent 4 weeks in hospital with suspected TIA, however not diagnosed as MRI all clear but they say due to amount of steroids I am in these could have masked the clot.
I am tripple positive with high ANA and anti ro positive plus DNA (tho I am not sure what this is). I am on high prednisolone (30mg), hydroxychloroquine 200mg twice a day, codeine, paracetamol, gabapentin, omeprazole plus at the moment trinzaparin injections and 2mg warfarin. I am attending the anticoagulant clinic at St James Hospital in Leeds every other day for both finger test and vein blood tests. I am also under Rheumatology at Chapel Allerton Hospital under prof Emery where I am currently having Rituximab infusions where I get constant mouth and nose thrush and also under neurologist again at chapel allerton under Dr Vittam so think I have a good specialised team.
What I find hard is that the symptoms are not settling or improving with all these medications. I was only diagnosed in November 2016 and it has been a whirlwind, in and out of hospital. In and out of work where I am now down to half pay but can't physically work with all tests and my symptoms.
At first lupus was the main condition however now it seems my APS has taken over and causing me lots of issues and I am worried plus scared.
My first INR result was 0.9 and I was put straight onto 10mg warfarin then my next result was 4.2 so they reduced my warfarin to 2mg. The last two have been within range 2-3 but they say they are worried how quickly I have reacted to the warfarin. I saw it as a positive.
I am back tomorrow again so shall see what happens.
sorry if this is long winded but I am not sure where to turn or how to accept it all.