APS

[Squiz66]

Hi there, I have recently been diagnosed with APS, but now being tested for Polmyoparthy (hope correct spelling) I have a target range of 3.5 - 4.5 but am finding that my INR can drop like a Bomb sometimes leaving me in a lot of pain in my Left Arm, I have had many scans that show no Artery is blocked so why does this keep happening?

[Manofmendip]

Hello and welcome to our friendly forum.

A couple of questions to help us and our members to help you.

Where are you from?

Who is managing your APS?

When I was on Warfarin and 75mg Aspirin, with a similar INR range to you, I sometimes had bad symptoms return and Prof Hughes moved me from Warfarin to Fragmin (low molecular weight Heparin) injections, plus 75mg Aspirin, and I am much better on this medication.

Dave

[MaryF Administrator]

Hi there and welcome, I echo the questions from my fellow administrator, Dave. Also when doing all the regular testing for Hughes Syndrome/APS it is crucial to also test your levels of Vitamin D and Iron, plus Thyroid. also something often overlooked with serious consequences is vitamin B12 deficiency which can cause the symptoms you mention. MaryF

[Squiz66]

Hi thank you Dave & MaryF.

I am currently living in Birmingham but originally from Yorkshire, I found it quite a shock when I was rushed into Hospital nearly 3 Years ago with the most Horrific Pain I have ever had, I actually thought I was having a Stroke the Paramedic that came to my house that night new different and called ahead to Heartlands Hospital to advise he thought it was a Blood Clot. I then had Surgery to remove the Clot and after numerous tests was I diagnosed with APS.

I have since had another clot again in same place and have had several admittance to Hospital with the same pain.

I am now trying to understand this Syndrome and would appreciate any Help I could get.

[Tammylola2012]

Has anyone medically suggested post thrombotic syndrome to you? I know I have post thrombotic syndrome in my left leg. It could possibly be that as clots will damage small valves in veins anywhere in your body. That is what makes it hurt so bad is when those valves can not pump blood back and forth to your heart and blood can not move as freely . Is there swelling along with the pain?

-Noelle