Anyone here on Warfarin. I am confused and sad

[lilyborderterrier]

I hate taking warfarin.

I’ve been on warfarin since mid December 2022 after a blood clot in my damaged kidney ( that’s another thread I may start as I am unsure of what’s going on with it, seeing a renal specialist next week) prescribed it in hospital and I have to go weekly to the hospital for my inr bloods which is stressful and inconvenient and my inr is always low. And the dose of warfarin keeps going up, I’m now on dalteparin injections to prevent more clots as it’s 1.2, my range is 2-3 which I’m a long way off. I’m unfortunately taking pain meds and antibiotics due to my kidney pain which I know isn’t great.
I’m rambling I know but I feel lost and hate taking this medication.
Has anyone got and tips or positive stories about raising inr levels.

thanks for reading this.

Dd is on tablet blood thinners due to a clot but not warfarin. It’s something called xalreto? She doesn’t need regular blood tests like with warfarin, is that an option?

dd’s clots were in her lungs. It’s likely she’ll need to be on the meds all her life as the clots were unprovoked. She’s about 7 weeks post clots. It’s scary.

I am on warfarin. Could you get a coagucheck machine. I had to buy mine but I know some people get them from their GP or hospital. I self test and dose myself. Unfortunately lots of things medications, fever etc cause your INR to drop or get too high. At least I can keep a close eye on mine.

Worth talking to your GP about moving into a NOAC. I was on Warfarin and am now on Rivaroxaban - much more straightforward

My parents were both on warfarin but didn’t get on with it. They both changed to apixaban (sp?).

It takes a while to get to your target range. It has to increase slowly. Which is why they do regular blood tests. Certain foods should be avoided ie grapefruit I think, not sure what other foods. There isn't really anything you can do to help increase result. Other blood thinners are on the market but they are relatively new. Warfarin has been around a long time and is considered the safest of blood thinners. Certain other meds needs to be avoided eg anti inflammatory drugs.

Apixaban is the more up to date version of rivaroxaban, neither need weekly bloods. Worth asking to switch.

On Clopidogerel after a stroke and don't need weekly tests.

It's unusual to start on warfarin nowadays, most people go on the other blood thinners that don't require inr. Perhaps it's to do with your kidney damage?
If not I'd ask to change.
@Cherrysoup What's the advantage of apixaban over riveroxaban?

I was on it for 6 months about 6 years ago, and was also really miserable on it. Partly because I find it hard to remember to take medication and partly because the regular trips to hospital for the warfarin clinic were depressing. It’s well worth asking if one of the other thinners might be suitable for you. Good luck!

I think it’s just the updated version according to the paramedics who attended my neighbour when she had a fall last year. I was on rivaroxaban 9 years ago.

If your kidney function is poor that is why you are on warfarin rather than a direct oral anticoagulant (DOAC).
Sorry I don't have any tips but hopefully the renal consultant will or you could ask for a referral to a haematologist?

Have been on all the anticoagulants over the years, warfarin was the worst (for me).

As others have said the NOAC such as apixaban and rivaraxoban are much better, but you do need frequent liver and kidney function tests with them which is perhaps why you haven’t been prescribed them? Worth asking. Both have an initial therapeutic (high) dose for say 3 weeks and usually continue for 3-6 months on a lower dose depending on severity and causation of clot. I’m on lifelong now.

Rivaroxaban and Apixaban are v similar but I tolerate apixaban better. It has a shorter half life so need more than one dose per day unlike rivaroxaban.

NOAC's whilst in some ways easier- no bloods, set amount, no ongoing tests, don't have a reversal agent like warfarin does. Can be a problem is requiring emergency surgery. Have you asked your team if they are an option for you?

I’m not entirely sure that’s true any more @SD1978 and thought reversal agents have been approved/are available.

Given the need to also monitor intake of Vit K with warfarin, the variability/instability of dosing for the right INR and frequent clinic appts, I wouldn’t be using warfarin unless the clinical team explained that was my only option.

What's the advantage of apixaban over riveroxaban? Periods in my experience. My haematologist told me that she’s heard lots of accounts that periods are much easier to cope with on Apixaban (although no studies have been done) and I’d agree with that totally. I couldn’t leave the house on days 2-3 and was too scared to sit on the sofa. Now, they’re normal again.

OP I’ve been on Warfarin and feel your pain. They should be able to increase your dose by a tiny amount to help you get to your range faster. I have no medical expertise apart from personal experience but I know I have to have regular blood tests for kidney and liver problems because I’m on Apixaban and they can cause damage, so I suspect that’s why they’ve put you on Warfarin. If it’s any consolation, the list of medication you can’t take on these pills is endless. I have medication for another condition and have to take additional pills to stop them clashing with the Apixaban.

The only other thing I’d add OP is it’s quite common to become anxious and ‘sad’ after a health incident like this and when needing ongoing treatment like warfarin. Perhaps read the website stoptheclot or similar to hear other stories. I’ve had different but numerous clots and years ago suffered with what I know recognise as panic attacks and a bit of depression because of it. All fine now, just didn’t join the dots and recognise it or the cause at the time.

Good luck 🤞

@Connamara- none in the ED I work in that I'm aware of- although that could be a cost issue of course. There are (two)? approved, but I know we haven't used any- although that's why it's usually younger people that are on them- the need of reversal is less likely as there is a lower falls risk.

Does it depend why you are on warfarin/oral anticoagulants, as to whether you can change to DOACs? I know they are approved for atrial fibrillation, not sure about other conditions, but the renal function could rule them out anyway.

It takes a while to settle on warfarin, so if you only started taking it a few weeks ago I would give it some more time. Once you have a regime that works for you, you will not have to have your INR checked so frequently. Also many people can have their blood tests done in the community, it depends on your local set up. Chin up. It will get better once it has stabilised.

OP what dose of warfarin are you on?

I ended up on 17.5mgs of warfarin to keep me in range! Was told that it didn’t matter about the high dose but I did get fed up when any new medical staff saw that dosage they’d be like whoa! 😱

I am now on rivaroxaban with just one annual blood test.

I hope you can come to terms with being on it, it will be keeping you safe.

You can’t take a DOAC with poor kidney function. I would imagine that’s why you are currently on warfarin. It can take a while to get in to range with your INR. My advice would be to look at your diet. Are you eating anything which may interfere with the warfarin. Lots of very useful info online. Also eating at regular times, keeping your diet fairly similar, changes of diet can throw INR off balance. And absolutely don’t forget to take one. That totally buggers things up. I used to check INR as part of my job and this was the info I was told to give people by our cardiologist. Diet is very often the problem apparently.

My husband had massive clots in his lungs back in August. He was in the hospital for 2 weeks to stabilise his INR and is now on warfarin for life, due to the clots being unprovoked. He takes 8mg for 6 days a week and 9mg for the other day. He's on warfarin instead of the other drugs due to his weight so he's doing his best to get fit and lose weight so he can hopefully so on the newer drugs.
His INR waivers between 2 and 3, and he goes for an INR check every 2 weeks at the moment. They keep trying to get him to go monthly instead but he wants to keep an eye on the numbers for peace of mind.
He felt "off" for a few months after coming out of hospital, and from what I've read on blood clot FB groups that's pretty normal. He said things just seemed kind of pointless and blah. I assume it was due to almost dying and depression in a way. He's feeling better now though and doesn't seem to have any obvious side effects.

I go to all my dads appts. He was left on warfarin as there is a reversal agent for it but not the new ones. This was 2022.

www.medicines.org.uk/emc/product/10933/smpc#gref

www.thepharmaletter.com/article/uk-s-nice-recommends-ondexxya

@CoffeeBoy
I am on Xalreto as well.I had a large good clot suddenly developing in my right lung 4 months ago.
I don't have regular blood tests either, just have to go for check up at the hospital next month. I just stay off anything containing Aspirin, and carry a card stating I am on blood thinners all the time in case I have an accident or dental and chiropody treatment etc.

I have been on Warfarin for 7 years now and like you, at first, I hated it but I've got used to it. I've had multiple blood clots and PEs , chronic pain, and my haematologist feels Warfarin is best fit for me . At this stage I'm pretty stable with my INR and only need to get levels checked every 4-6 weeks. It can be a bit awkward if I need surgery, as need to go off Warfarin and take Heparin injections pre and post surgery, but thankfully that hadn't been too often. I stay away from vitamin k loaded foods ( green vegetables, green tea, Grapefruit, cranberries etc) but other than that don't think about it too much. I am careful about not taking any over the counter drugs without checking with Pharmacist, as it is very sensitive to lots of meds. Try not
to get too stressed about it as you will get used to it and it will become just one of these things. It could also save your life by stopping any major blood clot. Best of luck to uou OP and really its not that bad!