hatten28

[Hatten28]

I have taken warfarin for 24 years, my consultant has changed me to Apixaban which I have not started yet.

Has anyone had any problems swapping over or have any tips for me.

I am an 85 year old female.

Any tips would be appreciated.

[BenHall1]

Hiya Hatten28,

Similar to my story, I'm 80. I was first put on Warfarin in January 2010 when my AF was diagnosed. ( my other meds were, Bisoprolol, Statins, Ramipril ... and later Felodopine ). When I retired and moved down to Cornwall my new ( youngish ) GP tried to get me off Warfarin onto one of these NOAC's - her drug of choice was Edoxaban. I kept refusing. I self test my own INR with my own device and am quite competant, as my INR Clinic will confirm.

One time in November 2023 I developed another medical condition and this gave my GP to chance to have her wicked, wicked way with me. She told me that the best thing to treat this was another medication ( name I can't remember ) but this requires me to come off Warfarin and go to ............... wait for it ............... Edoxaban. Now that was a surprise .... wannit ?

I did her bidding but by April 2024 I was experiencing the most, vile, horrid, and sleep disturbing nightmares you could ever imagine. My sleep loss was beyond anyones understanding. I then wrote an fairly aggressive, short tempered letter to my GP, fully explaining my experiences and that I planned to return to Warfarin and self testing. No if's, but's or maybes !! I also made it abundantly clear I was not prepared to use Apixaban, or the other two newbie drugs (names I've forgotten).

Sometimes ya just got to make a stand and put these people in their place. Whatever you choose, I hope it all works out well for you, Clearly, I do not plan to come off Warfarin anytime soon. If it ain't broke, don't fix it !!

[Hatten28 in reply to BenHall1]

Thank you for your contribution, but I’m hoping that the new drug works well for me and my husband as he has Alzheimer’s and I cannot get him or myself to the surgery for constant checks, life is difficult at present with not much hope of getting better.

Good news the surgery have realised our predicament and are arranging for the District Nurse to visit.

Thanks for your input Hatten

[manabouttown]

I personaly think it's a very good decision. Warfarin can cause renal damage and arterial calcification-hence you have to have frequent blood tests. Apixaban is a 'new' drug that has far fewer 'side effects' hence no need for such frequent blood tests.

[Hatten28 in reply to manabouttown]

Thank you for your reply, I think it may explain a lot of things which are wrong with me.

Atrial fibrillation

Aortic stenosis

Aneurysm

Frequent urine infections.

[BenHall1 in reply to manabouttown]

certainly totally untrue in my case. you've only given half the story

[baba in reply to BenHall1]

Lots of do very well on the new anticoagulants.

[BenHall1 in reply to baba]

I agree, and they are a blessing for those unable to handle Warfarin. Based on my 6 months experidnce with Edoxaban glad I'm okay with Warfarin.

[Cavalierrubie in reply to manabouttown]

I am on warfarin. I don’t have frequent blood tests for renal damage or arterial calcification. Where did you get that information please?

The blood test l have is for INR. To see that the dose is in the therapeutic range, which you are unable to know with the new DOAC’s. I am unable to tolerate these, so thank God for warfarin.

Warfarin has been around for 50 years or so. The medical profession are very experienced and more knowledgeable with warfarin. A doctor at A/E informed me l was on the best one.

I find your reply a bit disturbing.

[Hatten28 in reply to Cavalierrubie]

The reason for the renal checks is because I have lots of urine infections.

Also the aortic sclerosis was discovered when checking for breathlessness.

Hope you are ok

[Cavalierrubie in reply to Hatten28]

Sorry Hatten28. I was replying to manabouttown re his reply saying that warfarin causes renal damage and arterial calcification. There seems to be some crossed wires here.

I take warfarin and I have never heard of warfarin causing these problems. Lots of us have been taking it for years, it is as safe as houses and has been used for over 50 years.

I don’t think your medical problems are caused by warfarin do you? Have you ever been told of this? Take care.

[manabouttown in reply to Cavalierrubie]

I used the word 'can' not will.

[Cavalierrubie in reply to manabouttown]

But it doesn’t cause these problems. You are misinformed.

[BenHall1 in reply to manabouttown]

Unless you can prove otherwise from an authorative source I suggest what you wrote is nothing more than malarkey and unneccessary scarmongering !! To help you ................. the documents I'm looking for are NHS Health Advisories stating exactly what you wrote ......... and/or 2) An NHS Medication document - one that usually gives instructions on how to take the drug (usually found on the bit of paper in the packet which usually nobody reads ) with a statement as to side effects ...... the side effects to be sub divided into three classes of side effects : common, uncommon and rare !! That should keep you occupied !

AND ..... for the rest of the planet ........... I'm on Warfarin, my nominated test intervals at this stage are every 10 weeks, that means I test my INR 5.2 times a year. Really inconvenient .... NOT ! As I self test at home I can in fact test more frequently if I choose ............ I do this usually if I've been in party animal mode and been hogging out on food and drink willy nilly ( usually in summer time following BBQ's ). So thats quite often (Cornish weather permitting).

Yes I have annual (once a year) blood tests - these are comprise a wide range of blood tests covering the whole gammit of what my GP feels neccessary and further, once a year I'm called into my surgery with my Coaguchek device for a blood test. These days we do all this on the same day. So to get my INR one finger prick drop of blood goes onto my device test strip and the surgery device test strip and the results are compared. This is a safety back up to check on my device. Usually my device is giving a reading +/- 0.1 - depends on my blood at the moment in time I test.

Incidently my annual (once a year) blood tests include ( but are not limited to ) renal function, liver, thyroid, full blood count, NT-PRObnp (for heart failure), and serum sodium, to name the criticals. So what on earth is there not to like ? Does anybody really think that for the 70 years (at least) that Warfarin has been the only anticoagulant around it has been a medical evil ?

Nice work you guys in the drug cartels ........... if you can make it all stick. Nothing like devious marketing !! (Apologies, to the S. American drug cartels, didn't mean to insult you guys ).

[manabouttown in reply to BenHall1]

academic.oup.com/ndt/articl...

[BenHall1 in reply to manabouttown]

Thanks for that - I knew about Dabigatran from Australian Government Health advisories published in 2013 after fatalities with its use. No such health advisories have been released for Warfarin, either in Australia or UK in that time. The high level of controls that are automatic via the INR Testing process with Warfarin along with some 70 years of patient use would suggest Warfarin is a better deal in terms of patient safety, al beit with the perceived nuscience issues with the frequency of testing. Of course if someone chooses to ignore the protocols associated with Warfarin then ........ too bad, tough !

[manabouttown]

Hope the apixaban helps

[Thomas45]

In the early days of taking Warfarin my INR wouldn't settle, so I was put on Rivaroxaban. Within a short time after starting on it, I started to have pains throughout my body. I rang a GP after 4 days, who said my body would get used to it. It didn't. On the 12th day I decided not to take any more Rivaroxaban. On the 13th day I saw a GP who said he'd not realised how bad I was. I needed a stick to walk with, and couldn't get out of a chair without either pressing my hands down on a seat to lever myself up, or grab something higher to pull myself up.I was offered other DOACS or to go back to Warfarin. I bought my own Coaguchek meter to monitor my INR, and went back to Warfarin. My INR soon stabilised.As for the pains, they continued. After 5 weeks of being prescribed strong co-codamil, which hardly touched the pain, and having many blood tests, I was diagnosed as having an auto-immune condition called Polymyalgia Rheumatica. The only treatment is a very slowly reducing dose of Prednisolone, a steroid. It took just under 4 years to reduce my daily dose from 30mg a day to 1mg every 7 days, at which point I stopped.

When a new arrhythmia nurse suggested that I stopped Warfarin and went on to a DOAC, I refused, giving her details of my body's reaction to Rivaroxaban.

[BenHall1 in reply to Thomas45]

.... and this is why I'm sure drug manufacturers have "incentivised" many health care organisations ... to control market share ..eliminate warfarin and totally ignore patient care and safety. Always listen to your body.

I do the same as you, have my own coaguchek device, test strips and do my own INR testing givng all my tests results to my surgery team to enable them to update their records. These also show up on my NHS App. too.

[Hatten28 in reply to BenHall1]

I’m sure you are correct in your assumption, I was told would have to travel 7 miles into town for a INR as they are now too expensive for our surgery to supply.

No transport, disabled, and husband with Alzheimer’s,

Glad they saw sense and arranged for district nurse to call.

My alternative was a taxi there and back

[BenHall1 in reply to Hatten28]

Well, I would seriously question the knowledge base of my surgery. They clearly have not offered you the opportunity to use the Coaguchek device ( look it up on the Roche website) which enables you to purchase by installments and get test strips on prescription and do all your testing at home in your own time as convenient. That way you wouldn't need to go to surgery.

These days I'm never surprised as to what people put up with in this country particularly in the medical field ........... talk about a drug company marketeers delight. Its the first that I've hear of an INR being too expensive. It is actually no different to the process a diabetic uses to check his/her blood sugar levels.

[Cavalierrubie in reply to BenHall1]

Well said in all your replies John. I am with you all the way. The rubbish and lies we have to listen too. Believe them, you believe anything!

[jeryng]

I have never taken warfarin. Have been on apixaban for nearly six years with no problems whatsoever.

[Afibwinner]

I have been on apixaban. You should enjoy not being monitored as you were with warfarin. I started with Eliquis, then to Plavix and now to one 81mg baby aspirin daily, I have afib and sick sinus syndrome. I had a Watchman inserted and then a pacemaker. I have a monitor that monitors my heart constantly. Plavix is a great medicine and comes in a generic so it is not costly.I believe you will do better with Plavix than you did with wararin.

[Hatten28]

Thank you for your feedback, I feel more reassured

[Arnol]

I changed over to Apixaban a few years ago because my inr readings were up and down on Walfarin. Best thing i did, no more blood tests no side affects.

[Hatten28 in reply to Arnol]

Thank you thats what I needed to hear

[manabouttown]

2minutemedicine.com/the-ari...

[Threecats in reply to manabouttown]

Hi manabouttown

Wafarin may not be for everyone, of course but you will probably have noted from the study you have referenced that the participants on Wafarin were only in therapeutic range 62% of the time which is considered very poor control even by NICE standards. It is perhaps also worth noting that the study was funded by the company who make Apixaban.

May I refer you to this study for another side of the picture, particularly with regards to older folk.

ahajournals.org/doi/10.1161...

[manabouttown in reply to Threecats]

Thanks forthis.I guess the only conclusion from this is to consult extensively with your consultant and follow his/her advice.Kind Regards,John

[2learn]

My personal view based onmy own experience of having a stroke and multi infarcts is that apixaban may cause brain bleeds in some people. I didn't have these issues on warfarin. Don't know if there is any research into this.

[Threecats]

Hello

I’m sorry for the late reply but I just wanted to say my mother who is on Wafarin, was in the same position as you a few years ago, when my father developed sudden onset dementia. The surgery organised for the District Nurses to come out to do the INR checks, as she was classed as housebound due to her circumstances. It might be worth pressing for that rather than switching, if you haven’t already, of course.

Best wishes to you, TC

[Hatten28 in reply to Threecats]

Thank you for your response, I have already changed to Apixaban, iwas told that I would be classed as housebound but that was rescinded.

Strange when I have arthritis osteoporosis, heart problems heart failure and diabetes, can only walk a few yards on a good day.

I still manage to cope with my husband and his dementia but a lot of tears are shed.

Thank you hatten28

[Threecats in reply to Hatten28]

I’m so sorry to hear of your struggles. As you say, it’s ridiculous that you are not classed as housebound in the circumstances. The trouble is, it’s hard to fight one’s corner when you’re not feeling well and have such a lot of responsibility on your shoulders. Do you have a friend or family member who could advocate for you? I do think the decision to not class you as housebound should be appealed against, the decision to rescind seems cost based rather than based on patient need, as it should be.

I wish you well, TC