Hi I thought I would give an update. I wrote on here a while ago that the haematologist I had been referred to recommended that I am taken off
LMWH injections that have kept me relatively stable for over 13 years. It was terrifying as even being four hours late with injection consistently results in severe chest pains. I have never missed a day because my body reminds me very loudly.
Fortunately I was given invaluable information by Kelly In Texas, I found my way to a specialist in women's heart health Professor Peter Collins.
He immediately understood, having treated other APS patients and has written to my GP and Haematologist to say that I should definitely be on it, and explained the role of microclotting in the chest pain.
I have been so stressed by the fear of going through another long hospital admission, or worse if I was taken off the medication. It is such a huge weight lifted from my shoulders. I am immensely grateful for the support and advise from this group.
I hope this may be helpful to others who find themselves struggling to maintain their diagnosis and treatment, especially if chest pain is a major symptom.
It really shouldn't be this difficult but it is definitely worth persevering to find someone who has enough expertise and empathy to treat you well.
New cardiologist
My warfarin has level dropped from the set 4-4.5 to below 1.5, I am now on tinziparin only, anyone else had a similar reaction?
Neurologists and other health care professionals
Haematologist still says my migraines have nothing to do with APS/Hughes
Joint Pain
