Anticoagulation UK
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Managing blood thinning

Hi to forum.

I had a PE after a flight from uk to New Zealand and return in 2005. A blood clot in leg a few months after resulted in me being put on warfarin for life.

About a year ago I asked if I could change to apixaban as my INR is mostly in range but only 54% on target. As I have had some kidney problems and an op to remove stones I have to have blood tests to determine my kidney and liver functions before I can change to apixaban

I take several medications for type two diabetes and hope that apixaban will mean less tablets (than when on warfarin) and less testing.

I will update if I change to show how I get on with apixaban.

Jim

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Do you realise there is no antidote to apixaban? If you have a bleed you have to wait for it to wear off.

At least with Warfarin it can be controlled and you can self test when on it long term.

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Yes I realise that tk11.

On warfarin I have also been at risk when inr levels have been too high or too low. So I guess that I’ve been in danger of internal bleeding at one end of the scale and blood clots at the other.

I know that on apixaban there is no ‘antidote ‘ but the 12 hour window when it is not taken will hopefully be enough except in an emergency.

Hopefully an antidote will be found for future use.

Thank you for your interest in my post,much appreciated. 👍

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If your INR is mostly in range then you are mostly safe. You don’t mention any other clots while on warfarin so I assume there haven’t been any. So why do you want to give up something that works and change to something unknown? And something that may worsen your kidney problems at that. Have they told you what illness you have to give you clots? Has apixaban been approved for that illness? Is it really worth it just for less testing? Are you allowed to do home testing on a finger prick machine for warfarin? That might make things easier.

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Hi jumper.

Thanks for reply.

I only had the pe following long flight. Then another clot in thigh later.

I asked my practice nurse a while ago about new meds but she said we will see about your kidney problems first.

Last week my INR was again out of range and she said she will ask my doctor whether I can go on apixaban. Might know tomorrow as I have another INR test.

I don’t mind staying on warfarin but reading up on alternatives suggests it might be worth changing to something that might be more stable for me.

Time will tell.

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I have an INR test tomorrow too. I’ve been out of range for about 3 weeks now. Very unusual for me, I usually go back into range very easily.

I hope they have tested you for clotting illnesses as I don’t think you should have had clots for no reason.

Good luck with the test tomorrow.

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Thanks jumper 👍

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Hope you are back in range too.

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Hi Jim, I just switched from warfarin to Eliquis/Apixaban (this week). I had a DVT last Feb. (and one 13 years earlier during pregnancy). So far so good--- warfarin was so hard to stabilize for me-- I was on 15mg or more a day!! My number would rise abruptly with NO change in my diet---??! My body just fought it left and right. So after 6 most on Warfarin, my hematologist has me on Eliquis now at 5mg/2x a day until November (3 months) and then I'll go in for an Ultrasound on my DVT leg and if all looks good she'll lower my dose to 2.5mg/2x day from then on. It hasn't been quite a week--- the first day I had a bad headache all day--- which scared me, but since then I feel better and have woken up the past 2 mornings with no leg pain. Hoping that's a good sign!

Wishing you well in your healing and hoping that you get the best care possible for your future! Good luck!

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Thanks Nancy. I hope things improve for you on apixaban. I can’t imag having to fill up my tablet box with 16 tablets every day. Six has been my maximum.

When I first started taking it in 2005 they had different dose tablets. Now we only get the 1mg ones.

I love my vegetables so I’m looking forward to the freedom to eat a wider range. I understand that grapefruit will still have to be off the menu though. Heard different opinions on eating grapefruit.

😊👍

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Oh and BTW--- no testing and I can eat salad--- green tea--- and a glass of wine without fear! That's a big plus--- I couldn't have anything green before or my INR would plummet---it was crazy-- my diet was awful.

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one more thing--- in the USA, the FDA has approved an antidote for Apixaban ---Andexanet alfa.

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Thanks for that Nancy. Good to hear an antidote now exists. Not sure how long it will be before they use it in UK.

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Today started on Apixaban. My doctor said he takes NAOC’s and said they are better and safer than warfarin.

Hopefully they will prove to be a better option for me.

Thanks all of you for sharing your thoughts, experiences, and opinions.

👍😊

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Just make sure that they check your kidney and liver function tests after 3 months and every 6 monthly after that. If your kidney function alters then you may need a reduction in the apixaban dose. I think the problems you were having with your INR's may be because you were being managed by your GP /Practice nurse.Much better having it managed by a specialist service who do warfarin management day in day out. Also, as there doesn't seem to be any equivalent to the yellow warfarin book which you carry with you for NOACs It;s a good idea to buy a warning bracelet online.

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Thanks for advice misswoosie.

I will have full bloods tests in November as diabetes check. I will also get kidney and liver function checks.

I have already purchased a medical alert band and also a band that emergency services can scan to get my medical information.

Cheers 👍

Jim

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Great that you're clued up! My father who's 85 recently started anticoag' therapy and he has a bracelet. Just as well because he didn't tell the dentist even though they always ask if your medication has changed. My Mum was there too and she didn't tell them either. I tell them to carry the most recent repeat prescription with them but it's all a bit like water off a ducks back!

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I hope that your father is well and anticoagulant is working.

I know what it’s like. I’m 67 but my sister and brother in law are 10 years older. He is anti technology so computers, mobile phones, and sat navs are demons to him. He can’t see why I research for information about my condition and seek advice. Or wear alerts on my wrist.

He has terminal cancer and luckily he has allowed me to use Internet to sort out legal things and transfer into my sisters name. They now have more support in coping through a difficult time.

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Ah- father is unfortunately not good with technology. Can barely use a mobile phone. My mother is the same. My father was put on Apixaban when they discovered he had atrial fibrillation when he went into hospital with a fractured hip after he fell at home. So for stroke prevention.

At discharge the hospital gave him nothing.No written info. Zilch. He has his med's in a dosette box so he didn't even have the info/card out of the drug box. Frightens me that they're putting people on these NOACS and everyone thinks they're wonderful because they don't require monitoring. They do! You're still anticoagulated.

When my father came out of hospital after 4 weeks he was walking with a wheelie zimmer frame, but they have stairs and no downstairs toilet and I was terrified that he was going to fall on the stairs. Thankfully, 9 months later , he's walking with 1-2 sticks and driving again too (although not using his Sat Nav!).

He's in a much better place than the arrogant consultant led him to believe he would be "You'll probably never drive again or walk with a stick". His minimal progress in hospital was because there wasn't enough therapy input and the nursing staff didn't encourage him to get up and walk about or supervise him doing his exercises. Good job I used to be a nurse.

Good that your siblings have the support they need as it's not easy to get. I think the elderly are the forgotten generation in our country.

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That was terrible treatment of your dad. I agree that after care is poor and seems to be determined by costs sometimes. Good that your dad seems to be making progress.

I must say that every time I’ve been in hospital the care has been very good. But I have had to ask questions myself as they only seem to give the basics and send you away.

I find it strange that diabetes reviews are done once a year. A lot could change in that time.

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As an ex acute care Nurse Practitioner I notice gaps in care. It's chaotic IMO and communication, especially with family members is very poor.

I qualified in 1986 and the "new" nurses think us oldies are dinosaurs. Our care was criticised as being task orientated and regimented, but at least everything got done. It's gone too far the other way now. With the nurse to patient ratios we have nowadays the only thing that works is well organised and care. The ward managers don't seem to do ward rounds, checking charts ,asking questions or supervising the staff nurses. With dad there didn't seem to be a plan or any short or long term rehabilitation goals. Care just drifted along. I battled with inadequate pain assessment and control for 2 weeks, pointed out to the Dr that dad most likely had a chest infection (on a Friday evening on a (the!) ward at a community hospital that had no Dr or Nurse Practitioner on site overnight or over the weekend. His legs were like elephants with fluid for the whole time he was in there and his skin broke down but they waited till his discharge day to start him on water tablets! And they dared to say he'd made no progress with his mobility.

He's also diabetic (Type 2) and recently the practice nurse told him his blood check was so good that he could stop his metformin. They did that about 4 years ago and after 2 years put him back on it because, surprise, surprise, his HbA1c shot up. As you say, a lot can change in a year, and he;s already had bad cellulitis 4 years ago because he cut his leg in the garden and didn't do anything about it.

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