Kersten, Mary F, and aPNotSoFab and Luis-
I had problems two weeks ago w/ bladder. ( painful cramping with urination- bladder itself- not urethra- not UTI) Went to Obgyn. Initial urine sample was ok- detailed culture send out also ok. I suspect micro clots somewhere as I am still sub therapeutic. This might also be an issue for Luis to ask?
Also, I am having much nausea lately, (for past 4 days, 20 hours a day of nausea, non-responsive to zofran), my internist says this is normal with APS. Is that accurate?
Kersten - I'm studying APS with great fervor,Obviously. Kay Thackray's book is on back order at the moment via amazon. I think it will deliver next week. I also have Highways and Byways on order, as is his original book on APS .
Also- our daughter is in Texas from Princeton for the Holidays. She is a PhD student there and as a researcher ( scientist) which gives her access to medical journals. She has found a few APS journal articles citing problems with APS patients not breaking clots down correctly- so d- dimer tests might not be accurate reflections (Krone et. al. 2010., Impaired Fibrinolysis in the Antiphospholipid Syndrome) . Also some "state of the science" articles which review and summarize the understanding and treatment options (old, new and on the horizon) for APS (Ekrin et al. 2014., 14th International Congress on Antiphospholipid Antibodies Task Force Report on Antiphospholipid Syndrome Treatment Trends; Merashli et al. 2015., Antiphospholipid syndrome: an update; Lopez-Pedrera et. al. 2015., Immunotherapy in antiphospholipid syndrome)
. These articles recommend "add on" therapies for patients not fully responding to wafarin + heparin -- these include: Hydroxychloroquine, Statins, B-cell inhibitionn (e.g. Rituximab), complement inhibition (via "Complement 5a", but still in clinical trials), peptide thereapy (still in trials), and Vitamin D is recommended for all APS patients, as Vitamin D has important immunomodulatory functions.
For myself, 10 mg of warfarin daily for 10 days only yielded an INR of 2.3. Better but still too low. I was increased to 11 mg every day. If I cannot get the INR within range and/or i continue to have symptoms, possibly these additional treatment options would be? Does anyone have experience with these? But I feel the biggest blockade I face is not having access to LMW heparin (or fragmin/lovanox) in parallel to the warfarin. My hemotologist is unwilling to do this in conjunction with Coumadin, outside the hospital. Boosting Coumadin with heparin doesn't seem to be a standard therapy in the US.
PS. Yesterday I had a thyroid panel and vitamin b-12 screen done. (thank you ladies! I told doctor you requested so he obliged!)