Specialists in mountain west of the USA? - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Specialists in mountain west of the USA?

Ciche profile image
10 Replies

I am newly diagnosed with APS and Factor 5 Leiden. The Coumadin clinic has my target inr at 2-3. Everything I am reading on this site notes most are at 3-4.

I am wondering if there are any APS specialists in the Mountain West?

I live in Montana

Appreciate this site!

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Ciche
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MaryF profile image
MaryFAdministrator

Hi there and welcome, we have quite a lot from the USA on here, so somebody might know and tell you who they think is nearest to you, also do have a look at our charity website, which has international and European specialists, listed. ghic.world/

MaryF

Wittycjt profile image
Wittycjt

In Montana?

Ciche profile image
Ciche in reply to Wittycjt

Yes, live in Montana. I am being referred to a rheumatologist in Missoula, will know more after that visit.

Wittycjt profile image
Wittycjt in reply to Ciche

Best of wishes I hope it is someone who knows APS 👨‍⚕️ doctor

Ciche profile image
Ciche in reply to Wittycjt

Thank you. I read your profile and I am also aRN. Newly retired and had never heard of APS. Many years in the OR then admin work.

After reading posts on this site I feel fortunate that my presentation was a DVT with resultant PE after failure of xarelto. I will learn to cope but big adjustment and a new normal I guess!!!

Wittycjt profile image
Wittycjt

This is a good point. When I was on warfarin I was constantly wondering if something was not right because I didn’t have any symptoms and my INR was maintained between 2-3 but so many others were being maintained much higher like 3-4, etc, so I never trusted it. Being from the US where we’re trailing behind( I think) I wasn’t confident the doctor was correct.

Mute point for me now, as I am on lovenox/enoxaparin, asymptomatic, and “content”.

I am glad you pointed this out though for others here😁

Wittycjt profile image
Wittycjt

Yes, it is if I can help please ask away.

I posted above to APSnotfab

Wittycjt profile image
Wittycjt

Where put you on xeralto?

Ciche profile image
Ciche in reply to Wittycjt

I went to urgent care for my DVT. Started on xarelto, progressed to PE. They deduced that something else was going on, sent test for factor 5 and APS which were both confirmed. Then started on Lovenox then Coumadin

Wittycjt profile image
Wittycjt

I see🤓

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