Seeking doctors up to date on APS

[nubianprof63]

Is there anyone here from the Geater Kansas City area? If so, do you have any Rheumatology and Cardiology recommendations?

[GinaD]

I was diagnosed by a heme in Cinncy Ohio . Sorry

i don't know any docs closer to you

[Tofino5]

My APS specialist is in Denver. Sorry that is not closer but she is extremely knowledgeable and worked with Dr Hughes. I cannot recommend her highly enough. Straight west on I-70. Dr Jill Scofield. Good luck to you.

[nubianprof63 in reply to Tofino5]

Thanks maybe, i need to take a trip.

[KellyInTexas Administrator in reply to nubianprof63]

She is also one of my APS specialty Rheumatoligists. She is very good with rheumatology and I many cases can help patients with alternatives to warfarin IF and only IF she feels they fit/ match certain criteria. This alternative would be high dose twice daily apixiban. The , “ high dose “ would vary from 5 mg, 7.5mg, or 10mg twice daily. A patient might even choose 5 mg am and 7.5 or 10 mg Pm “depending on APS symptoms.”

Some patients are only on 5 mg twice daily .

An advantage is clopidogrel can be added a bit more safely with Apixiban than can be with warfarin.

Apixiban does away with the dangerous swings of the INR, in patients who have irrational INR’s despite adherence to steady dietary levels of vitamin K, etc.

For me, personally, Apixiban did not work nearly as effectively on all various arms of the clotting cascade that I needed it to. I still had severe neurological APS symptoms very badly with Apixiban. Numb face, tingling limbs, aphasia, seizures, autonomic dysfunction, gait disturbance, ....I felt practically untreated. I do know this is not the norm- but just be aware that it can happen.

I was on 10mg twice daily ( actually I went higher almost immediately in an emergency) but I was clotting, having seizures, and TIA symptoms. I stopped within about 12 days I think and had DVT’s. It did not work for me but I was her only patient she had ever had completely fail it like that.

If a patient has ever had a stroke out of the blue with no APS symptoms leading up to the stroke, she would not consider that patient a candidate for this Apixiban method.

She is extremely thorough. She is also very good at making sure you do not have any other underlying auto immune diseases that have been missed that could be exacerbating your APS.

She will likely want to evaluate you for Mast Cell Activation Syndrome. ( Mast Cell Disorder.)

You should be aware up front she does not accept insurance .

You should also be aware that In some severe neurological ( cerebral APS) cases she is not able to prescribe or manage warfarin out of state, as she is not a hematologist.

My personal feeing on the matter is ask your doctor ( Hematologist) his preference. When all is said and done you will ultimately be under his/ her care. He/ she needs to be comfortable taking care of you.

How would you feel about showing your Hematologist the information I suggested you print off? Including the link I included on your first post ? Share the story I just shared with you, but be sure to include the fact that most of Dr Schofield’s APS patient do very well on high dose Apixiban combined with 75 mg clopidogrel and a statin.

You will know fairly quickly if you are going to do well on on high dose Apixiban. I knew in a weeks time. I started at 7.5am 10 pm, and the very next morning felt terrible and went 10mg am , and by evening was at 10mg and the next day was at 12.5 mg for all doses until the very end I was at 15mg and final was 20( I was in hospital and had confirmed DVT, clear CT of brain with no bleed, blood was only a trickle into vial , way too thick, and I could not get ER doctor to give me 60mg of Lovenox needed to switch off Apixiban to Lovenox as letter stated- he would only give me 40 and admins me- no understanding of APS- so I took 20 mg of Apixiban as it was due and checked myself out AMA and the next morning switched myself over to Lovenox every 12 hours at 60mg. )

When I got to my Hematologist in San Antonio- who approved Dr Schofield’s Apixiban Trial and we had the back up of Lovenox if it went wrong- he told me I had done it just right to leave the ER AMA.

Ask your Hematologist if he / she might like a second set of eyes on this. My Rheumatoligist in San Antonio works hand in hand with my Hematologist in San Antonio. Right now they have me on Rituximab.