Leaflet said not to just stop Edoxoban, Cardiologist said you can

Hi Grace, after 3 months a further scan was done and this showed clot still not dissolved completely, so was told to stay on for 6 months. At 6 months I asked for a further clot because it still felt sore.  They said the clot had gone stringy and little bits were still there but no reason to stay on thinners apart from this AF problem.  Mine went from behind knee to two thirds the way up my right thigh, so it may be that mine was smaller and as it did not get to lungs I do not need the thinners for life.  Having said that, I sort of feel safe on them now I am used to them and worried about it coming back.  I was on Eliquis for 6 months but was really fed up taking tablets twice a day as I felt they were restrictive having to be taking at the same time everyday.  I then went onto edoxoban without any problems and you only take one a day, which is much easier as I take it with breakfast. Take care

Sorry meant scan not clot, should have read it properly.

Thanks. My clots were Dec 2016 and I have not been offered a scan since, so have no idea what is happening.

Hi, I don't think you automatically get given another scan, I just asked for it as my leg was still really sore and did not want to come off them until I was 100% sure it was gone.  My GP was just good about my concerns as they had misdiagnosed it for a week and told me it was cellulitis, only when I could stand the pain no more and I took myself off to A&E on Sunday 11th December did I find out what it was.  I was then told I would need more tests as it was probably cancer, then was told maybe not it could be HRT, so you can imagine my state of mind at that time.  I was extremely anxious and I think my GP understood this as he also arranged for the tests that should have been carried out at the time but weren't as HRT was used as an excuse.  I think that is why I am worried about coming off in case it was masking something worse.  That said, it has been a year now so should just accept it probably was HRT. I had only been on it for a few months prior to clot which is when it would happen. I don't think we get given enough aftercare for something that is so dangerous, so I would just ask for scans as peace of mind.  Take care

Thanks for the info.  I too was checked for cancer but all clear so far. Just would be interested to know if clot gone because I still get a lot of pain 14 months later.  Put on Eliquis for life due to having a clot 46 years earlier following surgery. This time unprovoked.

Glad you mentioned still having pain, mine was same time as yours December 2016 and I was just sitting here worrying about coming off the pills thinking how sore my leg was in the same area. To be honest the whole of my leg is horrendous, I had cellulitis about 4 years ago from a horse fly on the bottom front shin, right left, this has left my lower leg discoloured and could have caused the DVT as apparently damage done then has cut of veins, so that calf is a mass of veins and lumps and bumps and now the whole of my inner thigh where I had the clot is lumpy.  My left leg is completed unmarked, not a good look.  My GP has said that NHS won't help with veins so will have to go private if I want anything doing.  I think that we will always have pain due to the damage done.  Have you thought about Edoxoban which as I mentioned you only take one a day, I find this so much easier and if I was on the them for life, twice a day would drive me nuts. I had no side effects from changing, the change was suggested by the haematologist I went to see after scan showed it was taking a while to go, she said they were better as you are less likely to forget, probably also cheaper for NHS if truth known  LOL