Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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Off Warfarin after 15 months

tifconaway
tifconaway
I have three spots in my left leg that still have the clots but they have become part of the vein wall? The dozen or so PEs have cleared up. My doctor took me off warfarin and iron supplements yesterday. Excited and scared? I am to do blood tests once a month for the next several months, D taps? I think that was what it was called. No more birth control, and trying to keep away from people who smoke. Doc said it would take a week or so to feel blood thinners were out of my system, and is giving me 20 shots of Louvenex or one of those, I thought it started with an "H", pharmacy is ordering them, for me to give myself a shot in the belly for any long car trip or any airline flight.

Still feel my leg, I know that is normal, still taking Prozac and xanex, not anemic anymore.

So? I am going to start acutally having some energy and stop being so forgetful? I am going to start loosing hair? The "fog will lift" I don't even remember what that feels like. Don't want to be paranoid about getting another clot or PE. 40 of Prozac keeps me from completely obssessing, but can't wait to be off everything.

Thoughts anyone? If there is another blood clot it would come when? When do you know you are in the clear? Maybe we just live with it and watch for it? I really don't want to be a prozac zombie, although maybe just through my sons teenage years?? Thanks, Tiffany
rmb
rmb
Hi, I think it's great you're coming off warfarin. Most of the questions you're asking are completely unknow or that black and white. I do think all you can do is just live the best life you can, be mindful without making yourself nuts. That means doing to lovenox when you travel long distance, and staying hydrated, exercising and staying off hormonal birth control.

Since you're on other meds, it's hard to know if the lack of energy and brain fog is from that or the warfarin or a little bit of both.

Why do you think you'll start loosing hair now that you're off warfarin? Or are you saying will your hair grow back now that you're off warfarin? It will.

You are going to be fine Tiffany.
evelov
evelov
I came off after being on about a year. In my case, the brain fog, dizziness and fatigue dramatically went away. My hair is growing back and presenting a new problem. I have little hairs sticking up all over my head. Even using hair products has not totally tamed them. My hair stylist estimates I lsot 50% of my hair. I decided this is a good problem to have and the little hairs will eventually grow into longer hairs! It's great not having to worry about INR's and visiting the lab! Eating whatever you want!

I still have trouble with the DVT leg and still wear my compression hose. That is my most troublesome thing. I still have a lot of pain in it and having to sit and evaluate is this the regular pain or is it more sustained and worse to warrant an ER trip and ultrasound. We were on vacation in another state and I almost went to an ER. We were in a more remote area and I wasn't even sure where a good facility was at in the area. I medicated, got the leg up, etc. and it was better in a day or so. Being mindful, as rmb said, is the name of the game now. Exercising definitely helps! Good luck!
tifconaway
tifconaway
Thanks for the replies, mindful or crazed, a thin line at times! I thought I read on here that you lost hair after going off, but that might have been brain fog. I HATE compression stockings, bought several pairs and always manage to pull out the ones that are uncomfortable, should just throw them away. I was on this site all the time 15 months ago for a few months, then I just couldn't deal with reading anything else about it, you know, ignore and move on. But have always been grateful for knowing I was not going crazy or alone in this. Very hard to describe this to someone who has not gone thru it.

RMB, you are totally right! Going off warfarin and upping prozac may have the same effects, but then again I have the type of personality that will freak out over getting another clot/PE, and my teenage son is unable to provoke me, because I am unable to get that upset about anything, perhaps this is a good drug for parents of teenagers? Kidding of course.

Dyed two strips of my hair blue for the past year, although the guy messed it up this past August and they turned purple and are now pink turning into orange. Was nothing when I was in San Fran for a week, but I live in a very conservative town, I am certainly the only adult with pink in my hair here!!! Thank you so much for reading and caring enough to share, Tiffany
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