I am new here. I had bilateral pulmonary embolisms last year and that started a flurry of investigations as to the cause as there was no logical reason for me to have got them. Given my history of severe hemiplegic migraines and the fact I'd had 5 miscarriages between my two children it was pretty quickly narrowed down to APS and today it was confirmed by the haematologist.
For the last 6 months I have been on warfarin because of the PEs but my INR has been really unstable and fluctuating from 1.6 to 3.5 on a weekly basis even though I watch my Vit K intake like a hawk. The haemo said some people just don't metabolise warfarin very well and has put me on Clexane injections twice a day indefinitely.
I am actually quite pleased because when I was on Clexane briefly before getting to a therapeutic dose of Warfarin initially and then again when I had to stop the warfarin for surgery I felt so much better.
But I have heard that being on Clexane long term can cause osteoporosis and is not ideal. My GP wouldn't even entertain the idea when I asked her about it. Is anyone else on Clexane or another Low Weight Molecular Heparin instead of Warfarin?
And also do people find their symptoms improve when they are suitably decoagulated? It isn't just a placebo effect, it is real?
To complicate things I also have quite severe MS and am fairly disabled by that and there is no question of misdiagnosis in my case as I know there is many APS cases. My MRI is covered in blobs and lesions and I have too many classic MS symptoms and clinical signs. I am one of the oddities that collect auto-immune diseases as I also have IgA nephropathy, an auto-immune kidney disease as well.
Is there any one else here with MS as well as APS?
So that is two questions.... Is heparin OK long term and any other MSers with APS here? Sorry for being greedy! And thanks for running this site; I have a feeling it could be handy.