Progressive Aps

[markdjr1984]

Hello everyone. I am new here, but I am not new to living with aps. I've had it now for almost 6yrs and I continue to read about it and try to learn. I was diagnosed with a dvt in my leg and after be admitted into the hospital they found i had a pulmonary embolism as well. Very scary stuff. I read that aps is a progressive disorder and often times can develop lupus. I take warfarin daily will have to stay on it for the rest of my life. But I'm scared. Tomorrow my wife is going to take me to the hospital because theirs days I can barely walk because of my leg and just a day ago I found 2 very painful lumps on my calf muscle and I'm worried it's more clots. I'm just curious as to what some of you have experienced that I could learn from . I'm only 40 and I don't want to be taken from my kids this way.

[Star13]

First of all I’m so sorry you have been experiencing VTE’s, it is scary but you will get through it.

I’m not sure where you have read that APS is progressive or that it can “lead” to Lupus as I think both are wrong. You either have Lupus or you don’t but sometimes it depends on what tests are run if it gets diagnosed or not.

APS is a very controllable condition if you are on the right anticoagulant, which I assume you were? Normally it is warfarin but it’s important to have the INR high enough with APS. Some doctors who don’t properly understand APS don’t set it high enough and that can lead to recurrent clotting. Sometimes other anticoagulants like an anti platelet has to also be added with warfarin. It’s trial and error but once you find the right balance there is no reason for it to be progressive. In worse case scenarios people can have things like rituximab or other immune suppressive so there is no need to be scared. The most important thing is to get yourself a good APS doctor or haematologist who knows and understands the illness well or get yourself referred to a hospital that has specialists with that knowledge. Good Luck.

[BeachHaven123 in reply to Star13]

Hi!

APS can definitely be a bummer! At all the wrong times. PEs and lumps and bumps and bruising are her relatives. Since I don’t know what country you are in my only suggestion might be to try and find a physiatrist. (They put people back together again ) If you get things under control and find one they may be able to help you get through the relatives. Again, I too can not stress enough to get to a doctor who knows APS. In other words when a medical doctor needs say a bypass - they will ask how many the cardiologist has done. Reps. Familiarity. and number of cases treated are a major consideration. Perfect practice makes perfect. Especially with a rare disorder.

No worries ?! You’ve got this

Fingers Crossed!

My bruising was so bad a doctor even asked me if I was a victim of domestic violence ?🎱