Swapping from Warfarin to Apixaban - Anticoagulation UK

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Swapping from Warfarin to Apixaban

amhayllar
amhayllar

This week I am being swapped from Warfarin to being a lifer on Apixaban. I know we are all individuals and we will all have different experiences and side effects but any tips or advice? I am literally in a brain fog as had two DVT's which were unprovoked in my right leg 12 years ago and spent a long time being labelled a worrier before getting the proper help from Guys and At Thomas' Hospital vascular specialists. I had a stent op in January this year but the stents are getting blocked. My left leg is becoming discoloured now and being blocked and I have moderate post thrombotic syndrome, oh the joy and I'm on a long waiting list to have my problem veins heat sealed. Basically those two unprovoked DVT's have completely destroyed the inner legs from top to bottom. Let's not forget now wearing the compression socks for life. I m sorry for the long rant but am frustrated that when you have a DVT or PE you are not given adequate support, scans or taken seriously. It's getting a little better in terms of knowledge but being labelled a worrier for so long may have prevented me and others getting the right treatment sooner. Not only do I have the physical scars and the psychological scars, I'm trying to be positive but I'm trying to accept I have a long term medical condition that won't get better. Take care everyone and thank you for listening xx

43 Replies

I can totally sympathise with you, there really isn't nearly enough help or support for us, and that hasn't changed since my first PE in 1997! I have post thrombotic syndrome too and pain some days is unbearable, the stockings didn't really help me (make sure your measured for proper fitting ones). I am a lifer but on rivaroxaban since I was allergic to warfarin and they couldnt source phenindione. This site really helps and Facebook pages too, there seems to be more awareness in the US than here in the UK.

Shout if you have to it's the only way to be heard, I have many times. And trying to explain to doctors and physios they think they know better than the patient dealing with the problem?! It's us dealing with as you said the pain and phycological scars. Good luck! xx

Hello. From your thread . You are saying the DVT was in your right leg. Now post surgery having a stent put in your right leg , you now have issues with your left leg. Also , they put the stent in 8 months ago and it has already failed. Before surgery, did the Dr cover the risks of putting a stent in ?

Sorry to hear about all your issues . I had an unprovoked DVT 4 years ago and now had another one back in June. I agree it messes with your head.

amhayllar
amhayllar in reply to pingman777

They put stents at the top of my leg veins and they did both legs to balance it out. Apparently the blockage has gone from 20% to 45% in right side but they consider that relatively normal for a stent. When they do the scan in January and the blockage has increased they will have to put the balloon in to widen the veins. I noticed in February that my left leg was becoming discoloured so I contacted St Thomas's and asked for a scan and advice. The scan showed a slight blockage in left leg. Just to add to everything else at the moment I'm suffering from muscle spasms, real painful. Two weeks of medication and going back to Dr this morning, I think it's all related but who knows.

You will be safer on one if the newer drugs. Please make sure that you are taking 5mg twice a day. And not 2.5mg

Also, if you wish a once a day tablet in stead ask your Gp if you could swap to edoxaban or rivaroxaban.

St Thomas is one is the best centres for managing large clots so I am surprised that you do not feel supported.

Good luck with you new tablets, but please check that you are on the correct dose.

Sue

amhayllar
amhayllar in reply to Suebo2

I am supported at St Thomas Hospital yes, fabulous people but not locally. My local hospital just said 'wear the socks' that's it, no mention of post thrombotic syndrome.

amhayllar
amhayllar in reply to Suebo2

Am on 5mg twice a day x

amhayllar
amhayllar in reply to Suebo2

And I was seen by two local hospitals not one. No mention all those years ago that if you have two DVT's you are more likely to get post thrombotic syndrome. Apparently there are three levels, so they told me at St Thomas's Hospital and I'm moderate but you had to be mild first before you got to moderate.

amhayllar
amhayllar in reply to Suebo2

And the 'just wear the socks' message made no difference. I have worn the socks roughly for 10years anyway as conflicting information about whether you wear the socks on just the leg thats affected or both legs (as you are measured on both legs) and yes I wear measured compression socks and always have. The socks didn't help when I got cellulitis, I was wearing them at the time.

So sorry to hear how you have been let down :-(

I had history of Phlebitis in 2007, I had my first "unprovoked" DVT /Pulmonary Embolism 2016 and after the initial period of 6mths of rivaroxiban, there was no follow up.

6 mths after stopping treatment and still no known cause , 2017 I had a huge Pulmonary Embolism and am now on Apixaban for life. So it seems that little has changed since you had your first episode 12 years ago. I was reading these the other day: sciencedaily.com/releases/2...

sciencedaily.com/releases/2...

Basically, they know a percentage of patients are going to have a re-occurrence but do nothing about it because that would be prevention and they don't do that.

Very best wishes

sue_b
sue_b in reply to sue_b

Also, Apixaban seems to be a better choice than Rivaroxiban as there is an antidote if you have an incident that causes loss of blood. I asked my GP to switch me to Apixaban earlier this year. My Liver enzymes are now back in the normal ranges. This may have been due to the change in Meds ( always normal before the blood clots/rivaroxiban) or the fact that I had my Gall bladder out after a sudden issue with it. I know nothing about it and my GP had no comment to make when he told me the latest Liver function tests but I theorised, perhaps the gall-bladder was upsetting my liver, on the quiet.

I did read something about the liver and NOAC's which indicated that Apixaban was less harmful but I can't find the link now and the links I have found are contradicting that article. Typical, you can get the same statistics/find the ones you need, to prove whatever you want it seems.

Suebo2
Suebo2 in reply to sue_b

You mention an antidote for apixaban but not Rivaroxaban.

Both of them have the same antidote. adexanet Alfa.

Daneball
Daneball in reply to Suebo2

REally? I'm on Eliquis and I was unaware they had a reversal yet! That would be great news!

sue_b
sue_b in reply to Suebo2

OK, didn't know that it worked with rivaroxiban.

Jayge
Jayge in reply to Suebo2

Which hospitals carry it

Suebo2
Suebo2 in reply to sue_b

There is an option for prevention

amhayllar
amhayllar in reply to Suebo2

Which is?

Suebo2
Suebo2 in reply to amhayllar

A reduced dose once 6/12 treatment for DVT over. But needs careful review

amhayllar
amhayllar in reply to Suebo2

I just feel if you had a follow up scan more regularly especially if like me the DVT's or PE's were unprovoked. I went to a clot conference at Guy and St Thomas's Hospital over a year ago and it was very interesting to hear from vascular specialists and researchers and psychologists. It was very nice to meet other people at various stages of complications caused by thrombosis and to meet people who live all over the United Kingdom who have been referred to Guys and St Thomas Hospital. It just shows the need to have specialist units, it's just a shame there are not more.

sue_b
sue_b in reply to Suebo2

Hi Suebo2

it would be great to hear some of the information you gleened from Guys. :-)

amhayllar
amhayllar in reply to sue_b

The ironic thing was I sat on a coach for two hours to get there. Walked and then the conference was sat around circular tables, got up for some buffet, sat down for another couple of hours the coach sat down for another couple of hours. Too much sitting, surprised at a clot conference there wasn't an alarm to make you get up every so often and move. One of the speakers was a psychologist and he talked about the psychological aspects of DVTs and PEs, it was very interesting to have someone talk about it and how it does affect us all lifelong, how we change our clothing to hide our body, low self esteem and depression. He would like a future where everyone has access to a psychological clinic on site at hospitals so you can get counselling and other therapies following a diagnosis. It was free and run by thrombosis UK charity.

My DVT in right leg was discovered back in June 2018 - all I had was a swollen leg (which didn't even hurt) but after one doctor had tried ibuprofen (i.e. basically go away) my regular doctor took one look a week later and sent me to local hospital (do not pass go - get there immediately!) ... sure enough they kept me in for 5 days to stabilise anticoags ... sintrom here in Spain which acts same way as warfarin.

Here I am well over a year later and still on sintrom! They say it's precautionary and hopefully will stop at next review in December..

Can't complain at treatment tho - every 6 months an ultrasound and all sorts of blood tests have been done to rule out "causes" (which they admit they don't know). I was told to lose weight - DONE - 4 stone/25kg, and exercise - DOING - average 7km walking a day ....

My only grouse is not with the health service which has been brill, but the fact that I can't take anti-inflammatories for my arthritis. Really hope that gets sorted before weather gets cold!

Anyway, thought I'd share my experience but meanwhile hope you get sorted out :)

Thanks for sharing your experience.

Emarho
Emarho in reply to cheritorrox

I was warned about anti-inflammatories, also not to take the turmeric which had been excellent at keeping the worst arthritis symptoms at bay. I asked why the curries in the diet of eastern countries appeared to be tolerated, I was told that they die early (!). Instead I have been trying rosehip, and sultanas in Gin. Small quantities of course. Neither is as good as turmeric was.

cheritorrox
cheritorrox in reply to Emarho

How did you take the turmeric? Was it fresh or powdered? I'm going to ask haematologist about anti inflams on Monday ... noone has mentioned natural ones as being bad!

sue_b
sue_b in reply to cheritorrox

Well done you, 4 stone! Sounds like they are doing a great job with you rather than leaving everything to chance and dealing with the outcomes.

cheritorrox
cheritorrox in reply to sue_b

Can't knock spanish health system for anything from personal experience :)

Nature‘s Best tablets. They have several sorts of turmeric. As a rule the NHS don‘t mention it as being detrimental, but Southampton Hospital has an advice service for the area, and they suggested I should not take that or cod liver oil. I believe it was because they both reinforce the effect of anticoagulants. Natural substances can be harmful too, sadly.

amhayllar
amhayllar in reply to Emarho

It's a shame they didn't give me any advice when I was having scans there 8 years ago. They told me not to worry and just wear the compression socks. Look how well that turned out.

cheritorrox
cheritorrox in reply to Emarho

Well I take omega 3 plus glucosamine & condroitin which are also supposedly "banned" - because I take sintrom (like warfarin) I get regular checks on blood thinning levels and so far no problems! They can (and have ) adjust for how much vitamin K rich food I eat e.g. berries and altho I've never mentioned these other things the dosage seems fine. Maybe it's more of a problem on the ones which aren't monitored .. not availble here without paying so don't know anything about them.

Vitamin C is meant to strengthen the veins (take eg 500 mg am and pm, with food). A good multi-vitamin-and-mineral from a health food shop for up to three months, may help your body to help itself too.

cheritorrox
cheritorrox in reply to Polski

Even better make sure you're getting it naturally thru diet :)

Polski
Polski in reply to cheritorrox

Unfortunately we have no way of knowing how much of any particular substance we are getting through diet, nor how much more of that substance is being used up whilst processing the various drugs we are taking. Hence we can be very short of something without knowing it, however good our diet is.

Hence some of the problems this person is experiencing may be worsened by her being short on some essential mineral or vitamin or other needed chemical. My suggestion is intended to 'fill in the gaps' so that the body can start healing itself, which at present it sounds as though it is not managing to do.

To get this much Vitamin C through diet would mean eating eight or more oranges a day. Our bodies cannot make or store vitamin C, and need far more of it when we are unwell. I have suggested 1 grm a day, which doctors are usually happy with, but many people could benefit from much more.

Of course anyone following this suggestion should first check with their doctors that there is no good reason for them, in particular, not to do so eg It is probably unwise if the kidneys are not working well, as this approach assumes that any extra vitamins etc over and beyond what the body needs, will be safely excreted, usually via the kidneys.

cheritorrox
cheritorrox in reply to Polski

Sorry didn't mean to suggest supplement not a good idea ... as u say, need lots of it, preferably spread thru the day apparently x

I totally get where you are coming from. It is frightening and a life long issue. People think that you get a clot, then it 'dissolves' and you are fine. Not the case. I'm in Canada and I'm floored by the procedure some ppl have been offered in other countries. I've had 2 DVT's, first one very bad, settled in hip and groin, which resulted in a second DVT 8 years later, and now I'm on Eliquis for life. I've never been offered a stent or this other procedure you are speaking of. We used to have something here called a green shield, which was a mesh thing they put in the deep vein by the groin to catch any future clots from travelling up so you don't have a PE. They don't do them any more. I guess more risk than benefit. And I saw this other procedure online where they put this vacuum in that has a little drill and tool that scrapes the dvt or blockage out and sucks it down so it doesn't travel up. If i had the opportunity to do that, I would jump on it. I'm 46, been dealing with it for 12 years, and I WAS super healthy in all aspects. The blood thinners affect your tendons, I have workout injuries constantly tendon related that I didn't used to have. Plus you are so limited for pain treatment bc everything interacts with blood thinners. Would rather not be one them.

What is the stent being blocked by? And have the vascular surgeons ever investigated why you would get DVT in BOTH legs? I had both in same leg, and found out I have May Thurner Syndrome, which is a compression in the vessels in the left leg. and i I have Factor V leiden as well. Clots don't just happen. If it isn't lifestyle, there has to be something medical going on there, which is important to know, bc future events can be prevented or perhaps other treatments can be looked at.

cheritorrox
cheritorrox in reply to Daneball

Somewhere in all this it seems to me there's a need to jump up and down and INSIST on some answers!!

Guys and St Thomas's Hospital London is the only hospital to do this stent op, it's relatively new 2012 and done by key hole surgery and so they are learning as they go along too. Didn't really say what is blocking the stents, I'm guessing scarred tissue or something like that. I asked to be referred to Guys and St Thomas's Hospital London after being found out this is a vascular specialist centre and they also do research on all vascular conditions. It is a mesh stent yes. They couldn't give an answer to how long it would last as it is relatively new. Other hospitals don't offer it, so I thought I would take that chance. One of my local hospitals which happened to be Southampton Hospital told me they don't do the stripping procedure as it can irritate the already damaged veins and cause another clot ortwo and because I have clot in most/nearly all veins they wouldn't do it. They were the ones who just said wear the compression socks. They tested for May Syndrome, problems with my blood etc but I was a blood donor. The clots in my right leg were unprovoked, no cause and I'm told I will never know why and what caused them. It started as a siatica pain in my right buttock and then leg swelling. I was lucky I had some symptoms. I had someone I knew who died retrieving something from a vending machine. Didn't know they had a clot, walked on it and bam, shy straight to the heart. I have my clot tissue and blood samples over for research after my op as if it helps someone else...

I completely understand my symptoms started in 1995 and was diagnosed in 2009! I would either get told there was nothing wrong or get some stupid diagnosis like- spastic leg syndrome!! I had a PE n 2003 but wasn’t able to see a dr so It ended up in my body closing off 2/3rds of my Right lung. And when that was accidentally noticed they couldn’t figure out what it was but but said it looked like an PE but couldn’t have been. thankfully decided to just leave it. When I got my diagnosis in 2009 the dr said he was sure it was a PE, and that is exactly what it looks like. He suggested I sharply my right lung and carry X-rays when I travel so if something happens and they see that on their scans they don’t operate thinking it’s an active PE! But as a woman with multiple symptoms dr’s couldn’t possibly believe there was anything wrong just hormonal and looking for attention! I can’t tell u how many drs I walked out on. They were always so surprised but they were telling me BS with no intention of looking for something wrong with me. They couldn’t possibly understand y I didn’t want to schedule a follow up! Even when I had a stroke they denied it was a stroke. I thank god I found that one good dr and he saved my life! My only wish was that it had been sooner so that I could have sued some of those drs. Not for money but just so maybe the next time I woman came into their office they might just take a minute or so to consider there could be something wrong with her!

Sorry guess I needed to vent. But I understand how u felt and was treated the same way. It common in the US dr are biased against women!

Hope u get better soon

Soul Rebel

I was told by a Doctor that I don’t need to wear the compression socks anymore! Also couldn’t for a while as I broke a bone in my foot last year so don’t really bother now! Hope you get on ok.

The Apixaban is the least of my problems now. For the last month I've been suffering with lower back pain, then persistent muscle spasms, then pain in both hips and swollen abdomen with pain down left side and in the last week pain top of left leg. Been backwards and forwards to Dr, have had pelvic scan, chest X ray, hip X ray, bloods etc and had different medications and then it got too much yesterday and I went to A&E at my local hospital. Had bloods taken, CT scan, tests done because at one point they thought I had kidney stones. I have a urine infection and have antibiotics for 7 days but when examining my legs and the fact that I've been getting stiff and often lopsided in walking, the junior doctor found I have weakness in my left leg so they will be sending an email to Guy and St Thomas's Hospital to ask for another scan/investigations as my next scan is not till January. I had asked my doctor several times whether all the symptoms I had been having were linked. Seems they are. What I'm most frustrated with in this 10 hour A &E experience is I had to tell them my entire medical history starting with the clots in 2007 and then the appointments with London, the stent op, the blockages (which I can't really tell them about because I haven't received my copy of the report and the drs had closed for the day so they couldn't ring him either to ask). Now I guess I wait. I can only take paracetamol for the pain so not brilliant pain relief either. The NHS team at A&E were good though.

Great account - I think seeing a vascular specialist for an opinion is a good idea I did and got different advice

Still waiting for answers.....

How are you getting on after the stenting? How long did the post thrombotic syndrome take to come on? Did it improve at all after onset or just deteriorate over time?

Hope you're improving after stenting/heat sealing.

I am ok after the stenting, I do find in this hot weather I get a little breathless but I think that happens to all of us nowadays. I have developed some bruising around my left ankle since the stenting, not as bad as my right DVT leg which is damaged extensively inside and out. I'd probably say I got the post thrombotic syndrome roughly 3 years after my original clot, it would have started as mild at some point but by the time I found out I had it, it was moderate. I would say that all the symptoms match me, the way I feel psychologically and physically. I am on a waiting list to have varicose vein surgery on my right leg to heat seal some of the veins, I feel lucky to finally be under expert care but frustrated that years were taken fighting to get to this point. It's frustrating to know I won't ever get an answer to why me as a 28 year old healthy woman got two unprovoked DVT in my right leg but I am glad that there is more information and advice given now. I was supposed to have a colonoscopy to find out what's happening with my abdomen but it got cancelled just before lockdown. So still waiting for some answers. Take care everyone

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