Apixaban

Well, thats very interesting.

i am not sure whether to take a copy of this information to my next gp appt.

i wa particularly interested in the information about going up to 5mg.  Seems she was wrong with that advice.   I hink that as i said before, there is a lot of wrong information out there due to this being a fairly new med.

you are doing the right thing in getting a further appointmentso you know whats best for you.

as for me, gp still insists its 5mg only.  I am asking to return to warfarin until all this is sorted out.  I really felt unwell on the 5mg, which reaffirms my view it was too high.

i am so disappointed as i was just starting to feel ok on 2.5 

i suppose a change of gp may help, mine will retire soon so hope a new set of eyes will help.

thanks again, sorry for setting this all off, but as you have found , its not s clear cut as expected.

Hi Nigel  Thanks for your post very informative.  Hope all goes well for you when you have your specialised investigations - I would be interested to hear what they do if you do not mind sharing the info.

Hi,

Thanks Nigel for reporting back to the community! By chance did you hear anything about another NOAC called Dabigatran (Pradaxa)? I'm advised by my haematologist to switch to it from Warfarin, so would be happy to know a bit more about it. (I've been searching thrombosisuk's webpage, and couldn't find a link to the event you attended, to check on this myself.)

Many thanks in advance!

Jordi

Hi Jordon,

Unfortunately, we did not discuss the issues relating to Pradaxa! Sorry!

Dear All,

I will indeed share the findings of my Consult with the specialists in Liverpool!

Best wishes

Nigel

Thanks Nigel.  Hope you do not have to wait too long for your appointment and that they are able to answer all your questions.

Hi Nigel, Did they mention about the cancer risk with unprovoked DVT.  I had one in December behind knee and upper thigh.  Dr was looking at me in A&E and asked had I been on a long flight and when I said no, he said "that will be cancer then".  I was absolutely stunned, he then said about various tests and when I said I had started HRT 10 months ago, said "hold on", he ran off and came back and said that will be the cause, no tests needed.  How do they know it is the HRT? needless to say I have been googling and lo and behold, there is a NICE directive stating that 1 in 10 people with unprovoked DVT will have cancer within 6 months to a year.  At 57 and with an 18 year old due to start uni in September that is not what I want to hear.  I have been left to fend for myself and only through insistence that I get the tests have had bloods, which have all come clear and due to have a CT scan of stomach and pelvic area next Tuesday, only then can I get on with my life as I am so panicked about them finding something.  I am on apixiban 5mg twice a day and to be honest would rather stay on them for life than have another DVT.  The only thing I am not 100% sure of what caused my mum to have a DVT, as she is no longer around, died of lung cancer at 54, due to smoking, and have no way of knowing what it was caused by.  Take care and thanks for reading.

Dear Youngatheart,

Thanks for your message.

To begin, my first ever DVT was a 'provoked' one after major Orthopaedic surgery to my right knee, following being placed in a thigh length plaster cast.

Although my following episodes of DVT's and PE's were officially classed as 'unprovoked' the Consultants linked them to my original post operative DVT and classed me as being unlucky!

At no point during the Patient Information Day was the issue of cancer due to an unprovoked DVT referenced. The fact that the day was hosted by blood specialists who did not warrant it necessary to raise this issue, in my mind, puts this into perspective.

I would not worry about this. What I will do is enquire about this at my appointment with the specialists and get back to you with their response.

God bless you and good luck on your journey!

Hi I had an unprovoked clot in my leg which went to both lungs last November. Although, I also had a previous clot in my leg 46 years before following surgery. I was given blood tests at the time to rule out cancer and by good luck I had just had a smear test and was due a bowel screening and a breast check (all regular tests).  That is'nt to say I do not worry about cancer but my understanding was every one was given a blood test to check for tumours following a clot.  Different parts of the country seem to do different things and I have been told there will be no more scans due to the radiation risk involved.

Thanks Nigel, that is so reassuring. I would have thought it would have be high on the agenda if it was a real problem.  I did have a thrombophlebitis many years ago and a cellutitis in the same leg, so think that the leg was damaged anyway, so am hoping it is all related.  I wish I had someone local to discuss these things with, but I have had to find things out for myself and insist on tests etc.  My GP told me to stop apixiban cold turkey, I called the hospital and was told NO, you should have been send for a further scan etc, which they booked for me, this showed clot still there.  I think I would prefer to be on them for life, even a lower dose, it is one of those things, scary being on them, even scarier being off.  Take care and hopefully hear from you soon.

They took me off apixban because my clots in my lungs where gone but im so worried of getti g another one.

Hi Grace, that has been my problem, cancer was mentioned but no tests offered, just it was my HRT causing it. Only through my insistence that I am struggling to get on with my life not knowing whether I have cancer or not, has the GP finally sent me for a CT scan of abdomen and pelvic area, I am having this on Tuesday.  Luckily I had my smear and breast check six months earlier and all clear.  Have had fbc's but not to my knowledge cancer related bloods, although I expect if there was anything sinister it might show in my basic tests.  I think as you say various areas of the country are different, I am in Bedfordshire and to be honest was waiting in A&E for 8.5 hours before being seen and the place was in meltdown, so I think they were just glad to get rid of me, I went back the next day for inejction in stomach and scan and then the following day for repeat injection, given axipiban and told to get on with it.  That was in December. Will post again after scan.  Take care 

Hi, I hate being on it, but am even more scared to come off, like you I worry about getting another one.  I recently went to Italy on a short flight and ever since my legs feel really odd, like restless legs but all the time.  Will be having a repeat scan in June and then they will decide whether the 6 months has been enough, but consultant said probably 1 year.

Im so scarred of getting another one. But my hematologist says she cant see me staying on now that there gone.

After my pe s nobody mentioned possibility of cancer.  On warfarin, feel terrible. Should i have asked for cancer screening? They did ct scan and just said it was multiple bilateral pe s.  How will my GP be able to check if i have cancer anywhere, will blood tests show it?

Dear all,

I thought this might be of interest to some.

I contacted Thrombosis UK, and they are trying to arrange authorisation by the speakers on Liverpool's meeting last week [summarised by nigel0151], to post them online. In the meantime, we can watch presentations from earlier events on their youtube channel:

https://www.youtube.com/channel/UCjIjARwJxLEsXGemJw2Z2XQ

Hope this helps.

Jordi

Hi, I also have AF which is linked to acid reflux and the cure for that is apixiban so I am hoping I can stay on them for that, it not I will ask for a baby aspirin which id better than nothing, we see in about 3 weeks when I get my next scan. 

Hi Ann, sorry if I have scared you, it was mentioned to me in hospital and if you look at some of the other posts in this section others have been given tests for it as well.  You had the test by having the CT scan, which is what I am having on Tuesday as they assumed it was my HRT, but I want the scan to be sure.  Speak to your GP is worried. Take care 

I tried taking baby asprin but it kept giving me sharp pains where my heart is. So they told me to stop.

Thanks Jordi It would be great if they post the meeing from Liverpool that Nigel attended.