Can someone help me with symptoms? Is is possible to be on Heparin and Warfarin and still experience awful symptoms? Help please.

[TheKid]

I suffered a massive DVT in 2003 that almost killed me. Had another in 2009. Finally diagnosed with APS in 2010. Have been on Coumadin, but now realize I was experiencing symptoms all along that may be related to APS. I am wondering if others have had the problems I'm having. In the last week my INR mysteriously dropped to 1.1. At the same time, I had memory loss, confusion, chest pain and discomfort, anxiety, numbness in my fingers and toes and aches and pains all over. Oh and what seems like GERD, although it scares the heck out of me because of the chest pain. I am now injecting heparin and have upped my Coumadin dosage.These symptoms come and go, it seems. Is this normal for APS? Or should I be looking at other causes? I mean, I thought once your INR was in range, you shouldn't have problems. Is it possible that you can be in range and still suffer awful symptoms? Thanks.

[jessielou]

Hi hon

welcome and glad to meet you. Sorry you having such a tough time.

Yes your story very familiar on here. Lots of us find our symptoms get worse or come back when our inr too low, equally things better when inr higher. The gerd is also likely down to aps, i think a lot of us suffer with it.

I do understand about the pains in chest they are scary.

If any symptoms are new for you get them checked out, better safe than sorry.

Lots of useful info, support and a few laughs on here, good place to share, ask questions.

Hope you feelin well today.

Take care gentle hugs sheena xxxxx jessielou xxxxx jessielou

[TheKid]

Thanks JESSIELOU. Was also wondering if APS is a progressive disease. I ask because I feel like things have gotten worse over the years. And this last "episode" seems to have changed something within me. It's kind of hard to put into words, but I simply don't feel right. Things feel different now.

[Hidden]

Hi

Welcome along - as Sheena said, sorry you are having a rough time. We all understand what you mean when you say thatyou don't feel right and as long as you don't feel right, you need to talk to your doctor or consultant (or both) about it. I recommend that people keep diaries of symptoms as often two that go together can mean more that a list of ailments.

APS isn't progressive but needs to be well managed. the most important thing is to keep that INR up - become protective of it and question the experts if they change your range. There is a lot of chat on here regarding INR monitoring and medicating accordingly. I personally used to keep my INR above 3 and i self tested and self medicated too - I fought hard and had awesome doctors to do that.

It will get better just keep talking to the professionals.

Take care

Tx

[Herb]

If your INR drops you will not be protected against the symptoms, so if your INR dropped to 1.1 that could account for it.

It can take a while for the treatment to work properly.

If you have GERD are you also having tummy upsets that can play havoc with your INR.

The body cannot absorb the warfarin properly.

Once your INR is stable in range you should start to feel better but your INR will not necessarily stay in range, you need to get tested frequently to ensure it stays in range.

A lot of us need a INR tange of +3, you may find if your INR is higher you feel better after a while. I am wondering what type of doctor is seeing you for all this?

If the symptoms continue or you have anything severe you may need a brain scan to check for any possible altenative causes, particularly if you have been on anticoagulants for a while now.