My family and I are still trying to figure this Syndrome out with regards to how it is affecting my particular body, and I'm thinking there must be some commonalities between all of us. ( remember, I'm fairy new to this game we all got kid napped into playing, so I'm still trying to figure out the " rules.")
What do you guys think of this theory?
Starting early July I began re clotting with a brand new DVT , so I'm in the throes of a new clot I can't resolve. I'm running low grade fevers. Chills and flu like symptoms. We all know this score. It's three weeks of it. Im quite sure there is no underlying illness, just the auto immune business.
I'm having to still work part time , as needed, as we own our own companies and I must make payroll, help make decisions, and be supportive of our employees and be co- responsible. I also 5 doctors appoints last week alone. I'm really not complaining, as I feel fortunate most of the time I can rather easily do this and I think it's very good for me. I'm busy also with a nearly 16 year old son and all his cousins ( same age) and friends - normal busy family home.
These past few weeks though, as you have all had them, have not been healthy for me. I'm assuming I'm in a flare.
My INR is steadily declining despite greens staying steady, warfarin staying steady, ( warfarin mg as follows: 16, 16, 16, 17...16,16, 16, 17)
That's been holding me for a few weeks between 3.5-4.0 which is target.
Then I think I went into flare. Slowly dropped and immediately clotted. So I changed to 16, 16, 17, ..... 16, 16, 17
That helped only for a week or so.
Now I bumped one night a week to 18 and got rid of one of the 17's...( my INR had fallen to 3.0 and 3.1 this past week. That was by fingerbprick, so bybvein value 2.8 range. ) This helped immediately. Two days later ( yesterday) I was at 3.9 and low INR symptoms like headaches gone. Flare symptoms still with me though.
Because I have a home checker , I call my hematologist every Thursday and report in with my INR. I check it every day right now. It changes that much. I Bridge with Lovenox if 2.8 ( ish) or lower. My heme has learned I manage my Coumadin better than he can, because I am so unstable. He gives me the guide lines- no changing more than one mg at a time, and wait 3 days . Keep close contact with our office. Call with any big changes that occur.
So, to recap question, do you guys find that if you are in a " flare" you need to increase your Coumadin? How do I know if I'm in a flare? My doctor has never explained a flare.