2 different opinions! APS specialist ... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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2 different opinions! APS specialist or regular Hemotologist & Nanny 23


I'm in a debacle please help! I'm about to ask my APS SPECIALIST CUZ I'm confused! My Hemotologist of 12 years for Polycythemia Vera, was happy my INR was at 2.1! I'm not and my APS specialist said to stick with the Lovenox shots! Doc Don said, in going to have blood pooling in my calf whether or not my blood is thick or thin! He says I'm therapeutic at 2.1, but don't feel therapeutic! He said I may never feel good again no matter Wat my blood levels r! He told me go bak on the coomadin and stop Lovenox shots! I can get in touch with my APS SPECIALIST cuz I have her personal phone number! I think I need to listen to her instead of him! He was adamant with me! Very firm and he's never spoken to me that way! Wat do you people think! You too Dar! I'm amazed at y'all! I had blood pooling and spasms in my veins over week end! One min my leg whit, the next I'm in a spasm and foot turns blue! Thank God the doc saw this for himself and immediately put me on heparin! 2.1 is Not therapeutic for me! I feel like u no what!

4 Replies

Dr. Don got you sent to hospital with level at 2.1. You yourself felt much better with a higher level. Dr. In hospital who is a specialist that you trust told you to listen to APS SPECIALIST DR. CROMWELL. If it were me I would listen to what she has to say 1st. Maybe you need to be on Lovemox longer then go back to Coumadin. It's a tough decision you could get a 3rd opinion but I would try what dr Cromwell says 1st

Debbweb01 in reply to Nanny23

Yes I asked her and she said one do typhus keep u stable on my anticoagulant! Therefore she is the specialistsin APS, so I think I may stick with her! I cud not get in touch with Doc D over weekend also! But I do have her phone number and texting available! She gets bak to me within the hour! I feel very safe with her! She's very calm and soothing for the soul!!! I'll c how I feel on Jan 8 my next appt with Doc D shud have to b cancelled! I pray I'm doing the right thing!

diane1428 in reply to Debbweb01

I must admit for if I was in one 2.1 both my consultant n myself no I wouldn't be here. My inr's have to be around 3.5 for me to function n I still get muscle spasms.

Good luck with yr consultant I too have a very good one but a great haematlogist that has given me a free reign to have bloods whenever I need them and to see them whenever needed.

Think you must put yr side firmer. Take someone with you.

Have a good xmas


Great advise is being told here .

I am 2.5 to 3.5 and i have massive trouble with this APS

I am starting with a new PCP January 4 th .

This getting my range for INR pushed up is going to be my fist hurdle .

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