APS/SCT

[phirestar]

rhuemy & hemo think I have neurological APS. 3t orbit mri w white matter w some unusual differentials. No normal clinical symptoms. DV cause for mri. Neuro opthamoligist dx 4th cranial nerve palsy due to APS/SCT possible ischemic changes. Hemo leaning to eliquis. I have an appointment w a neuro immunologist in March. I’m looking at all possible medication alternatives including something for autoimmune. Any thots?

[Star13]

DOAC’s are not normally recommended for people with APS. Normally warfarin or LMW Heparin. Some people already on a DOAC when the guidelines changed may, with the agreement of their specialist stay on it in individual circumstances but general rule of thumb is not to use them. Is your Neurologist an APS specialist? If not you would be advised to find one.

[phirestar in reply to Star13]

I was declined by 2 neurologists after referral following mri. They said couldn’t accomodate and was assigned to a LOCUM who looked like a general neuro. I went hunting and found a neuro who is a neuro opthamoligist and neuro immunologist. Took some doing but got a referral to him. Hemo and rhuemy are waiting to see if an unusual differential described as “chronic infarct (unusual in this area as an isolated infarct” is a stroke. It showed a “Notable hyperintense T2/FLAIR signal lesion involving the splenium of the corpus callosum ”. No evidence of stroke, hemorrhage or clot. If neurological APS ( what rhuemy is leaning toward) it’s likely that the white matter spots are the result of APS. The other differential was demylation which is atypical of my age (72) likely referring to MS. I have no idea if the neuro immunologist is familiar w APS but he may be my best shot. Hemo has APS and SCD patients but I’m his only combo patient. If I don’t have the defined clinical symptoms I’m hunting for info on what might be available bc there is no treatment that I’ve been able to discover for neurological APS.

[Mama53 in reply to phirestar]

Not to sound dumb, but when you wrote SCD patients, do you mean Sarcoidosis? Probably not, but I have it as well as Factor V Leiden mutation and APS.

[phirestar in reply to Mama53]

sickle cell trait, Caucasian. He has sickle cell disease and trait patients. This combo is highly unusual.

[MaryF Administrator]

Hi, it is a good idea to have a specialist with a full working knowledge of Hughes Syndrome/APS, It is important to look at your levels regarding Vit D, B12, Folate, Ferritin, Thyroid etc as if these are not quite right, it can make conditions worse. MaryF

[phirestar in reply to MaryF]

I have hashi/hypo w wonky tsh results and am asymptomatic. My iron panel is ok but that has to do w SCT probably bc my HbS runs just under 40% and HbA runs around 57%. VD is good. B12 is good.

[TouchofFrost]

Hi. I have been on Eliquis for about 2 years after a stroke likely caused by taking Tamoxifen for 4 years. This is just my personal experience.I saw the brilliantly, formidable Dr Jill Schofield, in Denver and she recommended it and I went to my hemi who was super reluctant to switch me. He did finally, as I could not get on with Warfarin.

I love it and it appears to love me...so far.

I take 5 mg B.I.D. It's easy and convenient and I have no issues. I also take 1000mg of vit.D, Ubiquinol CO Q10 and 1 baby aspirin daily, per the recommendation of Dr Schofield and my hemi.

I was asymptomatic prior to diagnosis and I asymptomatic presently.

I am looking to get an appointment with an APS specialist in the UK since I'll be here for the next 3 years, so I'm curious what they will say.

I know lots on here are wary of DOAC's and as humans, we tend to go towards 'if it ain't broke don't fix it' and if you figure out Warfarin, lucky you -but personally I am happier and feel healthier on Eliquis...much more suitable for me than Warfarin.

Feel free to DM me if you have anymore questions I may be able to help with.

Big hugs,

[phirestar in reply to TouchofFrost]

I lack the enzyme to process warfarin so if that become an option, I need a reduced dose discovered by doing genetics. I’ve been told that I’m double positive. I’ve read that double positive is ok w eliquis but I’ve also read conflicting info. It’s been very difficult to find an APS specialist. I’m on my 3rd Medicare plan and 3rd hemo. My rhuemy seems to be informed bc of some labs/biopsy that she’s ordered for what ended up being another rare dx. She ordered the biopsy to rule out microthrombi from APS. Dx chilblain lupus erthematosus. The first rhuemy (different plan) I was referred to refused to see me bc I felt fine. The 2nd hemo referred me to UCSF for a second opinion and they cancelled appointment 2 days prior. I spent the next 9 months chasing renewals and axed them at that point. Could never make contact w them. I’ve heard about her before but it’s unlikely that I could get an appointment. I think docs are leaning toward neurological APS and no approved treatment. I have to figure out how to DM you.

[Mama53 in reply to TouchofFrost]

I begged my primary to switch me to Xarelto because at 55, I wanted to get a tattoo! Got a few, no problems, then my hemo said I really needed to be on warfarin for the issues I have so I went back to it. I honestly feel "safer" on the warfarin! I mean, I have my "testing machine" so I stay on top of my levels... When on Xarelto I had no idea, and when I switched back to the warfarin it took a while to get back to a therapeutic spot! Kinda makes me wonder if I was safe at all on the other?

[Tofino5]

I cannot speak to neurological APS, but I am on Eliquis for 6 years now. I’m triple positive, high titres, hashimoto’s, sjogren’s and etc. I did poorly on warfarin for over 10 years, and I’m doing great on Eliquis. I know it’s not generally recommended for APS, but it gave me my life back. I wish you the best.