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.

Thank you everyone for taking the time to reply to my message x
you have given me some good tips and advice.
I’m 44, was active before this medical issue and don’t have periods as I hade a hysterectomy in 2019. I don’t drink or smoke at all.

Its all so very new and strange. I am not well with this kidney issue so having so many painkillers and antibiotics is going to affect it. I am not eating well and feel meh.

I suppose I have to go regularly as my levels are low but what I hate is the accusing tone they say when my inr levels keep going down. Like I’m doing something wrong. I cannot imagine being on it the rest of my life.

thanks for replying x

I had 9 months on warfarin back when I was younger as had a dvt and pulmonary embolism. I hated the constant hospital trips too!

Is there not a more modern blood thinner these days?

Bless you sending

Ive been on rivaroxoban for 5 years. Ididnt know about kidney function, I have stage 3 kidney function, so my GP surely should have taken me off it!

I’ve been on warferin for six years now due to my atrial fibrillation. And because my AF is valvular I can’t be prescribed one of the other medications.

Your kidney function will be part of the reason why you can’t take apixaban, and also apixaban has a higher possibility of blood clots which is why being on an unmonitored drug carries its own risks.

Have a look at what you’re eating. There are lots of foods which interfere with warferin.

Broccoli/coliflower for instance contain vitaminK which will have an impact. Leafy greens also have an impact.

Things like alcohol and grapefruit will increase your INR, but it’s best to reduce the foods which will reduce it so that your INR can rise to a desirable level.

@Connamara ondexxya (Andexanet Alfa) is not widely used because of the lack of good evidence and significant risk of side effects. It also costs about £15,000 per go. www.nice.org.uk/guidance/ta697

I'm now on warfarin after being on Apixaban for 2 years and still having DVT's and then a PE at Christmas. My consultant has said that I will now be on Warfarin for life. It took just over 3 weeks to get my INR in range and that only happened after having Clexane injections for 4 days. I'm now in range at 2.2 and take 10mg warfarin per day. I'm still getting very tired if I do too much and I'm also getting lung pain . I had some investigations last week and everything has come back as normal so the doctors have said that I need to rest and give it time. Your body needs time to heal and adjust to the new medication .🤗

Hi @lilyborderterrier, I’m sorry you’re feeling so low. I have no idea what they think you could possibly be doing to lower your INR (apart from lowering your meds, and that would be dumb)… silly people. I think you need to discuss how you’re feeling with your doctors. As someone upthread said before, it’s really common for people to become depressed after a life-changing event like a chronic illness or injury. It’s quite logical when your lifestyle has changed so drastically and so suddenly. They may help you by adjusting your pain meds (sometimes a contributing factor to low mood), prescribing gentle exercise if that’s appropriate, maybe antidepressants, a support group and/or counselling. Please don’t dismiss the benefits that can be gained from talking with people in a similar situation. You’ll find it’s not all doom and gloom. The gallows humour and giggles over cups of tea are life-affirming and it’s so great to know you’re not alone.

It sounds as though you have to be on warfarin due to poor renal function. Nobody is going to put a patient on warfarin these days unless it is absolutely necessary.
It takes around 6 to 8 weeks to stabilise the dose/INR, especially difficult if you are taking antibiotics and /or painkillers. If you are on antibiotics that will be why you need weekly INRs.
You should have been given a booklet containing diet and medicine information.
Self testing used to be very popular before the DOACs came in. I am sure you could be taught to do it, though you would have to pay for the coagucheck, most clinics will give you the test strips.
Google Thrombosis UK for help and support. I will see if I can find a link.

thrombosisuk.org/

Have a look on here OP. This organisation is to support patients and HCPs.

Agree with previous posters regarding Xrelto/Rivoroxaban. I had a blood clot on my lung nearly 5 years ago and after treatment to disperse it,was put on Xarelto indefinitely. I only have to have a blood test once every 6 months. So far I've experienced no problems with it. It's much more straightforward than taking warfarin,so might be worth asking about it.

I think that unless you are a qualified medical professional you should not be discussing what anticoagulants the OP should “ask for” or should “expect” to be on. Everyone is prescribed different anticoags depending on A)Their Medical Condition - is it the right anti coagulant for the job? Not all anticoagulants work the same way. Prescribing the wrong one could be lethal - and very, very quickly.
B) Their allergies and any interactions with drugs they may be on.
You don’t want to take a tablet and wake up with four boobs and a mullet do you?
C) Do they have allergies?
D) Medical condition
E)Drug availability
F) How the drug is metabolised and it’s effects on the body