Hello, my name is Alice and I am a researcher at Oxford University. We are planning a project on novel oral anticoagulants (NOACS). This class of drugs was developed to reduce the risk of blood clots and strokes without the need for regular monitoring.
We plan to review the results from all the clinical trials of NOACS to get a clear idea of their advantages and disadvantages compared to warfarin. By using Freedom of Information (FOI) requests, we will include the results of trials that may not have been made publically available before.
We would really like to hear the thoughts and views of people on anticoagulation about our plans.
Do you think this project is a good idea?
What types of advantages and disadvantages would you be interested in knowing about when considering a new anticoagulant?
Is there anything else you would like to tell us about that could help with the design of this project?
Thank you very much for your help.
Alice
Written by
act44
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I recently changed from warfarin to a NOAC because of the freedom from constant monitoring and fewer interactions with other drugs and food. However, I had to change back again due to side effects. This particular drug (rivaroxaban) clearly did not agree with me personally.
I don't know if my experience is of any help to you in your project? I would certainly be interested in the results of trials that may not have been made public. I feel that these new drugs are still not sufficiently tried and tested, especially over the longer term.
I have been taking Dabigatran for over two years following AF and cardioversion. I have had no adverse effects but always wonder whether its doing a good job in thinning the blood as there is no monitoring. If I cut myself shaving the blood clots normally unlike my brother who is on Warfarin and has big problems if he bleeds. Possibly a six month check on viscosity would be welcomed.
I am on rivaroxaban and would be very interested, I was allergic to warfarin and put onto phenindione back in 2009 but in 2012 due to lack of availability I was then put into the new drug rivaroxaban but I am very willing to help out.
have been on pradaxa for some years after a period on warfarin now 77 wonder whether safest and most efficient at my age and whether some of the symptoms I have are just old age or as a result of pradaxa any further examination would be greatly appreciated either to have peace of mind or make a correction
Yes a study of the kind you envisage would be worthwhile. I've had two blot clots in my leg treated with rivaroxiban - 6 weeks and 12 weeks. It is useful to review the clinical issues, especially with regard to risk and effectiveness between warfarin and the newer drugs. There seems to be considerable resistance by NHS authorities to prescribe the newer drugs long term. This may in part be because warfarin is the standard tried and tested treatment, but much of this reluctance seems to be on grounds of cost; citing warfarin as much cheaper. As far as I can see this kind of cost comparison has mainly focussed on the cost of the drugs and fails to take into account all the other medical costs of monitoring and treatment in the event of INR extremes. Neither does it take into account the economic and social costs of warfarin - travel to clinics, time off work, need to watch diet etc. etc. - that are incurred with warfarin and are largely avoided with the newer drugs. So, in addition to clinical studies a thorough cost benefit analysis would be worthwhile.
I agree would be beneficial to find out if riveroxoban thins blood same as warfarin I don't bleed or bruise the same with no checks wonder if it's actually working? Having already had 2 strokes I really don't want another. Great idea
I would definitely be interested in the results of this project. I am Oxford based, was on Warfarin for 5 years and had numerous issues with it, I moved to rivaroxaban and had a catastrophic event, was put on Apixaban subsequently and had no problems at all.
I would really be interested in any clinical research on NOACS pre and post operative. As far as I know, there isn't any!. I was briefly put back onto Warfarin after a year on Apixaban as a precautionary post operative measure, only to be hospitalised with internal bleeding and be put back on Apixaban. If there'd been more evidence to substantiate that NOACs are safe post-op, I could've potentially avoided an extra week's stay at the JR!
I think the project you suggest would be very interesting. I have been on Rivaroxaban for 18 months after complaining loudly about how bad Warfarin made me feel. I feel much better on Rivaroxaban but also have had much less support or monitoring. No one has asked how I am on it and I have had blood taken once, after I reminded the doctor, to check liver and kidney function. I am not aware that any checks have been done to establish that it is actually thinning my blood and like others I don't seem to bruise excessively.
It would be interesting to know how effective it is and how this is tested.
I've had previously been diagnosed with clots on the lungs in July 2015 put on injections to start then while waiting for a scan had arterial spasms causing a minor heart attack or so they say ! I'm not convinced with troponin going from 3 -24 but they said I had even though I was awake anyway VQ scan said high probability of multiple clots on lungs so they asked me to look at leaflets about anticoagulants warfrin & Apixaban I read the pros and cons of them & Apixaban seemed the sensible choice or so I thought. After a couple of months of Apixaban I was having worse symptoms that made me investigate the clots it was just burning pain in my lungs but after stay in hospital 4 weeks having had an angiogram saying slight narrowing of left decending coronary artery 40% slight fairing of arteries I was told that was Ok but clots were my concerns as nobody knows why I got them I'm 53 skinny don't smoke or. Drink or take illicit drugs although I've not been as mobile as I used to be having had M.E for 7 yrs anyway I ended up back in hospital with difficulty getting breathless and tight chest this was after 2 months of anticoagulant Apixaban I felt like the medicine was the cause of the symptoms and I was sweating along with weird blood pressure intimitently and a weird pulse that's always been a steady rate it's now high 90's -125 this is after I've just been told my CT scan shows completely clear healthy lungs ? I switched from Apixaban about 3 weeks ago injecting myself with clexaine low molecular heparin twice a day in my stomach because I didn't agree with Apixaban.
Now I've had all clear I'm worse than ever and feel strange no follow ups and hemotologist appointment isn't until January she's done no bloods apart from DDimer saying it's negative I thought I'd be tested for clotting disorders my Gp and the hospital are awful here in Liverpool so I'm now suffering in silence rather than go back to a wicked hospital with non compassionate staff and poor knowledge jnr doctors and registrars together with nasty nurses I feel like I'm dying but I'm not going to die surrounded by bad people.
An excellent project. I would be happy to contribute.
I take Rivaroxyban following two lots of PEs. Warfarin made me feel terrible.
My husband takes Apixaban. He has had multiple DVTs and a PE. Had a cranial bleed on Warfarin , DVT while on Rivaroxyban so was put on Apixaban. He has been diagnosed with Hughes Syndrome.
Any research on long term effects of NOACs will be very welcome as we are both on them for life!
thank you for your reply. Firstly, can I say, thank you for making the focus of your work an unbiased review of the research to date.
I don't think enough people realise that omitted research data is common. If you don't object, I will post a little bit more about your research plans so that others can see in more detail what it is about.
Also, although I realise it is not the focus of your work, from my own experience of the use of Rivaroxiban and Apixaban, I do believe there are questions to be asked.
Also, patients need to take the upper hand with regard to reporting of adverse reactions as I am pretty sure my own GP hasn't bothered to report my reaction to Apixaban. I intend to ensure he does.
I have been on Apixaban since the 21st Sept. The first month I did not have any ill effects but towards the end of Oct I felt as though my head was expanding and "swimmy". My face became very red although I had not taken alcohol. My alcohol intake is minimal, barely half a glass daily and often, none at all.
I immediately reduced (I am a retired registered nurse) the daily dose by 2.5mg and felt considerably better after 24 hrs.
I went to my doctor and asked if I could have the dose reduced to 2.5mg twice daily
(previously it has been 5mg twice daily).
I am 76 years old and he said that if I took 2.5mg twice daily it would be "sub-therapeutic." I am now on 5mg morning and 2.5mg evening daily.
So far, a fortnight into this regime, I feel alright. I have no other symptoms.
I should say that I have atrial fibrillation with no valvular impairment as far as I know.
The only other medicine I take is 100mg of Thyroxin daily.
I am taking Nicoumalone for AF... I was very afraid of anticoagulation as my mother suffered an almost life ending bleed whilst on Warfarin.
After much persuasion and support my nurse specialist helped me brave the first step to avoid a stroke, but I cannot be on it if I cannot monitor INR results to make me feel safe.
I cannot and will not change onto these new drugs with no antidote available, so I hope random people with fears like mine will be considered in your study as I would rather stop taking anything than risk a bleed like that...sorry
I would be very interested to hear about the NOAC advantages over warfarin.
Some of us are still being told we must stay on warfarin by our GP and cardiologist as we are in range on the day we have the blood test. I am concerned about the other 56/70/84 days between tests.
I am experiencing tightness in chest, chest pain and shortness of breath.
I am wondering if the symptoms could possibly be attributable to being on Apixaban, which I switched to on the advice of my Haematologist after I was switched to Rivaroxaban from warfarin my my GP.
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