Hi all, anyone found it impossible to take anticoagulations due to very bad side effects, including swollen legs, nausea, weight loss, itching, exbaustion, and just generally feeling so unwell that life doesn’t seem worthwhile. I have tried Apixaban and Xarelto - I also take Bisoprol (no problem, together with a antistatin, again no problem.
Does anyone have any idea how else to deal with AF?
Many thanks,
Liz
Hi Liz.
I'm not a doctor so this is my personal view only. The effects you mention (just in my opinion and I could be wrong) don't sound like they are a result of anticoagulants. Some people may have an allergic reaction to anticoagulants, which can cause symptoms such as rash, hives, and difficulty breathing.
Anticoagulants won't 'deal' with afib - they will simply reduce your chances of a stroke. This post is not intended as medical advice but a suggestion to seek further advice from a medic (such as dialing 111).
Paul
Thank you Paul for your reply. All I can tell you you is that I have only experienced these effects when I have been taking anti.coagulants, firstly Apixan and more recently, Xarelto. Having spoken to one of my GPs, she did confirm,that whereas these aren’t common reactions, they do happen!
I just wonder if anyone can suggest anything else? I have read about the Watchman implant and wondered if anyone had any experience of this?
Bes Wishes,
Liz
Try warfarin. Been on it for 17 years zero issues.
I take Warfarin - have done for 13 years - no sweat. I would never take the NOAC's. I also take Bisoprolol ( 5 mg).
John
hi carneuny , out of interest why do you say you would never take NOACS, i.e have you had a bad personel experience.
Hi Tomred,
Well no personal experience ... I don't take them.
However, when I was diagnosed with AF 13 years ago (almost to the day) I was put on Warfarin. There was nothing else !
At that time a range of drug manufacturers got these 4 main drugs from experimental to the research stage and then into the next stage of development. Testing. This lasted quite some years. Two of my GP's wouldn't look at them for that reason plus they were significantly more expensive for the NHS than Warfarin.
Somewhere in my past posts I put something on about one of these and a negative health advisory published by the Australian Government Theraputic Drug Administration where deaths were resulting in certain groups of people/patients.
These drug companies I regard as having acted a bit like a latin American drug cartel, emphasis being on cartel - get the drugs into the market, get revenue in big time to pay for all the years in research and manufacture.
So nowdays my latest GP wants me to switch from Warfarin to the NOAC's. I told her firmly but bluntly what she could do with them ! I think NICE have published some comparative costings somewhere along the line.
I also cannot help but note that increasingly, as the NOAC's have penetrated the healthcare market increasing numbers of patients find many many side effects, some already identified, others not so. Warfarin also has side effects with many people but at least it has 50 years ( maybe more) of proven performance.... and all you need to is to self test.
thank you carneuny, I think pushing the NOACS has a lot to with money!! I will probably end up on Warfarin as I am not prepared to suffer the side effects of the anticoagulants. Did you have no side effects at all on Warfarin? Many thanks for your help. Liz
Hi Liz,
When you first are put on Warfarin it will take your body some 2 to 3 weeks (depends on the individual) to accept it. By definition that means for your INR to get to within the prescribed range. Mine ( with no other medical oddities other than AF ) is 2.0 to 3.0. If a patient has other conditions, heart valves etc. the range is different. Some have a range of 4.0 to 5.0.
Initially your healthcare professional will want to do an INR every 2 weeks. I am now on every 10 week INR tests and have been for some years. I am 90 + % stable and my INR range is 2.4 to 2.7 and I take 5 mg one day and the alternate day I take 4 mg.
Much is said about diet, can't eat this can't eat that, no greens no grapefruit, no greens, no cranberry etc. No alcohol. I have never followed this mantra as I found it easy .... hate greens, never eat cranberry. Made no concessions to alcohol, just booze on ... just less than ever before.
Other surgical/ medical procedures ... no sweat. At worst I've had a knee replacement, stopped warfarin 6 days before, under the knife, came around and they whacked two injections of a bridging anticoagulant into my tummy (Fragmin), then back on Warfarin with that nights dose. No sweat. Also had a CT Scan and 2 cataract ops.
Take my device on holidays with me, even to Australia. Hey look ..... I lead a normal life. I'm now 78 and drive double decker buses part time during college terms, all authorised by DVLA who have my medical records. The worst side effects for me has been bruising from accidental household knocks and bangs. Eventually you'll learn to become careful 😂😂
If you look on NICE website you'll find much on Warfarin and diet. If you go to the Roche Coaguchek XS website you'll find out all about the device. Further, Warfarin doesn't like being messed about ........... it adores consistency ! So it is possible to evolve a diet that you like including greens or whatever so long as you eat small, regular and do it with consistency .... develop a food intake plan. Eventually it'll become 2nd nature.
Sometimes your INR will chuck a wobbly for no reason, don't panic. It happens. Remember an INR close to 1.0 means you are getting close to bloods of a normal adult healthy individual - i.e. its getting thicker. An INR of 3.0 means its getting thiner.
When I get home tonight I'll finish this off and talk about my relationship with my GP Surgery and my Surgery based INR clinic. Meanwhile this will give you something to mull over.
John
Hi Liz,
I was gonna comment on relationship with GP Surgery. The first ( in Surrey) was highly positive and it was them that encouraged me to self test, and once there they supported me, all through the learning curve.
My next GP after I moved to Cornwall was as much use as a chocolate fireguard - bloody useless. They would not accept Coaguchek and insisted on the old blood letting trick from a vein in the arm, sending it away and getting a result then changing the dose. Problem was they didn't know I cross checked them with my home testing - it all blew up and gallons of surgery tears were spilt. I changed GP Surgeries.
The next Cornish surgery I changed over to and who I am still with were much more progressive with their own INR Clinic. They encourage and support home INR testing and even go to the trouble of once a year placing a drop of blood on their device and mine at the same time to test the results to ensure the results are the same or at least close (usually my variation is 0.1). Test strips are on NHS prescription, I buy the device. Last I heard it was £400 but you could buy it interest free over 12 month installments.
In effect, this testing process is no different to that which a diabetic goes through to monitor their bloods. I wouldn't have it any other way. All I do is prick my finger, drop blood onto the test strip ( which is in the device), get a reading. Then phone or email it to my INR Clinic. They then get back to me with a new test date (going forward) and my new dose. So simples.
John
thanks for reply i fully understand your stance on the issue, and fully agree with you regarding big pharma.
Not sure what an antistatin is Liz but both Bisoprolol and most statins have side effects not dissimilar to some of the ones you have mentioned. Rivaroxaban can cause stomach problems if not taken with a full fat meal but we don’t get many posts from folk taking other NOAC’s complaining about side effects. Anyone taking regular medication will probably find it difficult to establish which might be causing what but it could be potentially very dangerous to stop taking any anticoagulants as part of an experimental exercise. As far as I know, the only effect treatment as an alternative to anticoagulants is a Watchman device which requires surgery, is expensive and is not generally available here in the UK. Some talk about natural based alternatives but assessing their efficacy is challenging and the consequences of getting it wrong are dire…I’ve taken Apixaban since 2014 with no problems……
Dear FlapJack, sorry, what I meant to was ‘statins’ not anti statins. I have been taking statins and Bisopropol for years and no problems at all. However, it would appear that anticoagulants do not agree with me. Watchman sounds interesting but not provided on NHS. Haven’t tried warfarin yet!!
Watchman is available under the NHS but rarely I guess. I worked as a carer for 3 years when I retired and was aware of 2 of my friends offered. Both declined as it happened and died shortly afterward through unrelated causes.
The surgery offered was in a different area and they would have had to travel to Oxford and given their other illnesses neither wanted to make what they considered to be a gruelling journey … and one couldn’t understand why the nhs was wasting money on him - bless him!
Hi Lizdoglover
All I can say is that I can share your experience but seem to be in such a small minority I have ceased to write about it.
My AF was found by chance at a Blood Pressure test about 7 years ago. I had no symptoms and still do not. I am a 74 year old woman. I have no blood pressure problems or increased heart rate. My heart rate is erratic.Monitored by echocardiogram .I have a weak left valve. I regarded myself as pretty well at the time!
I don't take any medication...other than inhaler compounds. I am currently trying to breathe daily as I believe I have had a bad reaction to Covid vaccines ending up in A and E twice unable to breathe . This after never having had a symptom of Covid or testing positive ...PCR included.. I no longer accept the boosters.
I now seem to find medications can affect me adversely...very adversely in fact. .My mobility is obviously of great importance to me but after NOACs...Edoxaban followed by Rivaroxaban....I couldnt get out of a chair. I am left now far less mobile than I was when my AF was found by chance. I still have no symptoms which affect me.
I haven't tried the warfarin route. I was asked to try dabigatran but am too apprehensive to do that after my experiences with the NOACs. Then two A and E trips more recently. I have found the whole situation extremely debilitating and don't fit into anyone's 'box'. We are all individual after all. I have been treated exceptionally well by all the medical staff I have been seen by and wish I could accept their entreaties!
I feel this reply may be unhelpful to you and does not fit the general pattern but I am me and can only go by my (well documented by me) experiences.
I am very well aware of the higher risks to me due to my decisions.
Very best wishes.
hello to you. I was diagnosed with Atrial Flutter, etopics and periods of tachycardia I had Ablation at the end of Sept 2022. My experience is that I tried Apixaban and suffered with gastric problems. My GP was happy for me to trial another anticoagulant so I was prescribed Edoxaban 30mg once daily this is the lowest dose as i weigh under 9 stone. I am ok with this medication . There are several anticoagulants to trial. I too would rather not take any medication as I tend to react to them but the alternative of a possible stroke is far too scary. I also take Bisosporol 1.25mg as a PIP. I have Flecainide 50 mg twice daily if the Bisosporol doesn’t help. I would suggest you discuss this further with your GP in the hope you find an anticoagulant you can tolerate. I also know people who are happy on Warfarin. All the best to you
hi All,
Thank you all for your very informative replies to my request for help. Obviously I can’t afford to go down the Watchman route so I will probably have to give Warfarin a go and also do some research into anything else which might help. Fairy Feathers your experience was most helpful, just to know that someone has experienced the same feeling of being the ‘only one’ . Many thanks to everyone and any further information very gratefully received.
Best Wishes
Liz
There is the possibility that it is the addition of one more drug to your drug " cocktail" that is causing these symptoms. For people who are sensitive to meds in general the more different drugs they take the worse they feel. This is a very big risk in polypharmacy and is probably more common in women . Many drugs that have been around a long time were never tested in clinical trials on women . Even female lab animals were not used in the pre clinicals. Even now there is very rarely separate sex based analysis of results It has only been realised quite recently that female physiology is different and women can react differently to men to drugs. In particular that the one size fits all dosing is causing overdosing in women for certain drugs. Even though you say you have taken Bisoprolol and a statin without problem statin side effects can take years before manifesting themselves though this is unusual. Personally I cannot take the full dose of Apixaban. I became aware that the increased joint pain and digestive issues I was experiencing were due to the drug when I was taken off it for 8 days prior to my first hip replacement and given Lovenox bridging jabs. I have since experimented with different doses to confirm this. I know this is unorthodox and I am taking a risk but I feel I have to balance daily misery against the possibility of a stroke that might never happen. If you get on badly with one "ban" the others will probably give the same side effects. If I were you I would try Pradaxa but ask to try the reduced dose. This is not a half dose like the "bans" have but something in between. In the clinical trials there was not an enormous difference in effectiveness against stroke. If this is no good ask to try Warfarin. Warfarin used with the self testing so as to keep within INR most of the time is as effective as the DOACs and has the advantage of having been around a lot longer.
Hello Liz, sorry to hear you feel so bad with things at the moment, I’m taking Apixiban and do suffer with Nausea on a regular basis, but don’t really know if it’s Apixiban that contributes to it or something else, I don’t know if going into AF makes you feel Nauseous, maybe a chat to a Cardiologist would help you but as we all know speaking to anyone to help is almost impossible now, wish I had something more positive to help you. John
Thanks John, I am absolutely certain with me that these are responsible. If I discontinue them, the symptoms stop!!
Hi Lizdoglover,I had a bad reaction to Rivaroxaban, causing pains throughout my body . For me Rivaroxaban was the straw that broke the camel's back. I was on a variety of drugs for high blood pressure, asthma, AF, and a benign prostate problem. My body reacted to Rivaroxaban causing an auto-immune reaction.
I only took Rivaroxaban for 12 days, but the pains continued caused by the autoimmune condition which was identified as Polymeria Rheumatica. This doesn't appear to be what you have.
My GP said he would prescribe any of the other DOACS or Warfarin. Warfarin has been in use as an anticoagulant for 50 years or more, so I chose Warfarin, which causes no side effects. Contrary to what you may read about Warfarin it does not restrict your diet. I eat no meat, apart from fish twice a week. I eat at least five helpings of different vegetables a day, including those rich in vitamin K. What's important is that you have a regular diet.
Beta blockers cause me urticaria so I waxy taken off them.
I've had AF for about 28 years. It's now permanent but asymptomatic. I take no medication for the AF, apart from Warfarin as an anticoagulant.
Hello Thomas45. That is great to hear. Thank you very much. I will almost certainly try it. It would be great to feel like a human being again!!
Liz
I have had no problems with the anticoagulants at all but the Bisoprolol played havoc with me as did calcium channel blockers - tried all different ones and combinations for about 9 months now don't take any at all just anticoagulants.
Xarelto crippled me. Joint and muscle stiffness and pain. I got off of it and take Neprinol and Natto. Pain gone in three days. Dumb Doc insisted i had arthritis.
l take Eliquis … zero problems. I take Sotalol… zero problems. Feel better soon. Jan Maree
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