I realise similar questions have been asked in the past, but APS Fab's li to the survey got me thinking.
I had to change GPs recently (house move), so in my introductory appointment at the surgery, I obviously told him about being APS. I also had a specialist appointment at St. Mark's in London for a contributory condition but not for APS issues.
In both cases, they sort of asked whether I had any contact with haematologists, or APS specialists to "manage" my condition. I realised I did not.
I was diagnosed in 2009, following extended illness with UC and several clotting incidents (DVTs and PEs), at the time thought to be caused by UC and periods of illness induced inactivity - even though some clots occurred in hospital while under clexane/heparin cover. The diagnosis was explained - sticky blood, etc. The treatment option was warfarin, for life, or until a wider range of drugs became tested and licenced (early days of NOAC research).
Because I was in the Army, being on warfarin meant I couldn't do some of my job and was restricted to what I could do and where I could be deployed. I asked whether there could be any change to my warfarinisation, but the reply was that any Anti-Coag would have the same effect, so the limitation was not APS, but treating it.
The next contact related to APS was last year, to request a change from warfarin to a NOAC to make management easier - I was leaving the Army and thought regular INR tests might be difficult to manage. I switched to Rivaroxaban.
So, bottom line, I haven't been under any sort of haematology or APS specialist (to my knowledge), almost as if diagnosis and treatment with warfarin was it. There has been no follow up without me requesting it, to attempt to improve my situation.
Is this normal? Do I need to see anyone, even if at 5 or 10 year intervals? Can APS subside, in the same way it apparently "happened" over my period of illness? Has the assumption been that because my UC treatment remains the priority and ongoing, that the APS is managed by warfarin and now Rivaroxaban, so that's it?
Phew. I'm not expecting a silver lining, I don't even know if there's a cloud. I'm managing my conditions, but sometimes wonder if there's anything I'm missing - I'm not one for Internet research and self diagnosis/treatment theories, but equally feel like suggesting to my doctor I need to see a specialist, when there's nothing "wrong" is taking up valuable resources.
Thanks for reading!