Was wondering if anybody knew about anti-xa and deltaparin. Got wife's results from Tuesday and her anti-xa was 1.18. Haematologist dropped dose of deltaparin, resulting in having very little limbs.
Apparently therapeutic level is 0.5 - 1
Is it usual for Hughes Syndrome to need above therapeutic levels with deltaparin?
HI, I think it would be a good idea to direct your question to your Wife's consultant or nurse attached to the clinic, can you give them a ring. I enclose this for you to read, sorry for the short answer, I am currently unwell and also travelling. ncbi.nlm.nih.gov/pmc/articl...
Mary F
Over many years and with experience would I higher the recommended dose - on the whole, even being triple positive, the recommended dose for my weight works.
If your wife is suffering with the reduction in dose please contact her consultant asap. Only her consultant should adjust this.
Thank you, unfortunately weighing my wife is a problem due to mobility. Everytime we find a hoist with scales they are broken! Good news her limbs came back yesterday afternoon and hopefully will stay around. Wondering if been at hospital for 2 full days tired her out? But then again on the higher dose it didn't seem to bother her. Really getting a bit tired of second guessing everything. Was hoping that with a professor of haematology I could have a little rest from analysing everything, lol. Got a sneaky suspicion we are going to end up going to Manchester. I'm going to update the hospital on monday and see what happens.
One of my symptoms of an ,” INR” being too low is I have limbs that feel that they do not quite belong of this world.
It was a symptom before diagnosis. I would drop things at first. Fountain pens, toast with marmalade... ( always marmalade side down of course!) etc.
Doing the washing up at the kitchen sink was a strange affair and still is with regards to drinking glasses. I used a baby bottle brush for glasses and stem ware. I can’t tell how much pressure I exert on glasses when I hold them or when I hold the brush. I’ve broken a few.
I feel like my arms are can , “ float.” Either that or are too heavy. They never seem to be ,” weighted” correctly.
I also have trouble with my legs. The floor comes too soon under the foot sometimes. It’s a surprise. The spatial relationship is off but it’s not visual. It’s more like ,” where does the limb belong in relationship to being on my body.”
Sometimes for a second or two I swill start to walk but a leg will simply not get the message from brain and there is a disconnect/ delay. One leg will not go ! It’s a sight to see... very rare for this to happen.
It’s really hard to explain.
It’s like you have taken a trip to an unknown planet, you’ve come back, and now your being asked to describe it to someone who’s never been there. It’s hard enough to describe a foreign country to someone, the nuances of new food or spices that don’t exist in your home land. Try a completely new planet. There are hardly the words...
It can be blatant to nuanced.
Read this to your wife. See if it resonates with her at all.
Mine is better with more anticoagulation, but permanent damage has been done.
Once I was diagnosed my neurologist in Texas sent me to a MS specialist in San Antonio. She knew it was APS, but she knows APS and MS both. Her name is Dr.Rebecca Romero. I think she is lovely and extremely competent. She understand and echos what Dr Hughes states and my neurologist state. It’s in the category of fluctuating myelopathy, even transverse myelitis but I’ve never been acutely ill in the hospital with transverse myelitis, certainly nor have any MRI’s shown this to be a problem.
I have “ banding tightness” in leg reflexes. ( too fast of reflexes.) My balance is slightly off times, and always off if I close my eyes and stand.
All signs of temporary too low INR.
Dr Hughes told the to tiny capillaries supplying the tiny nerves coming out of the spine were sliding in my case- and this was not uncommon- the balance problems anyway.
The bigger point I am making is I assume and hope you have a neurologist that is well up to speed with APS. If not, this would be what I advise next. This neurologist needs to liaise with whomever is handling the LMWH. You must not self adjust it.
IGM Anti-Cardiolipin Antibodies
Warfarin and anti-flammatory meds 
Anti inflammatory 
anti smooth muscle antibody
