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Atrial Fibrillation Support

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The NOAC Tour

Txflower profile image
26 Replies

I have been on a tour of NOAC’s since February 25 after being on warfarin for three years. This is my third attempt to leave warfarin, diet restrictions and INR’s behind. I started with Xarelto because I had taken it with Flecinide before. I was on it six weeks with mixed results. I had some nausea and diarrhea with some muscle soreness, hunger and mild depressed feelings. EP okayed a trial of Savaysa since it did not contain lactose. I lasted two weeks on it feeling sick a lot of the time. It has mannitol (sugar alcohol) as a filler which may be the culprit. My husband really wanted me to try Eliquis another time. So for the last six weeks, I have been taking it with lactaid and a full meal. Not good. Diarrhea at least two to three times a week and nausea. My plan was to stay on Eliquis for two months to see if I might finally get past the side effects, but not sure if I can keep going. This is not understandable for most of you who take these medications with no issues, but for a small group of us, it is a challenge. Not sure what to do next. Quality of life is important. Must be on a blood thinner because of age and being a female.

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Txflower
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26 Replies
CDreamer profile image
CDreamer

I sympathise as I have a long list of drugs which are contraindicated for me such as Beta Blockers, thankfully anti-coagulants haven’t given me any problems.

Have you investigate your suitability for a Watchman procedure as an alternative? They are used in the US but very unlikely to be widely available in the UK until recently. I know the NHS commissioned a trial in 2017 - not quite sure what the criteria is but worth an ask of your doctor?

Put Watchman in the search window and see what threads come up. I know I few people have posted that they went down that route.

Franny50 profile image
Franny50 in reply toCDreamer

American EP, longtime AF blogger, Medscape contributor, Dr. John Mandrola has doubts about Watchman. drjohnm.org/2019/05/still-n...

Txflower profile image
Txflower in reply toCDreamer

I do know about the Watchman but not ready go down that road. Thank you for you reply.

CDreamer profile image
CDreamer

You may find this thread of interest healthunlocked.com/afassoci...

I see that you have tried apixaban, edoxaban and rivaroxaban so far. All three of these have similar ingredients and therefore, may produce similar side effects. Dabigatran works at a different point of the clotting process, and contains different ingredients. You might find this more successful.

Good luck, and please keep us informed!

Regards, Rachel - AF Association Patient Services

Txflower profile image
Txflower in reply to

My EP’s office doesn’t prescribe Pradaxa normally because of so many digestive issues of patients.

in reply toTxflower

I have been on Pradaxa for a long time and no problems at all!

CDreamer profile image
CDreamer in reply to

I had a lot of digestive issues when on Pradaxa.

Lilypocket profile image
Lilypocket in reply toTxflower

I take Pradaxa with no problems at all. Oddly enough I eat a banana everyday which helps any tummy upsets (from other foods). It might be worth a try? It is even safer now there is an antidote. Where do you live (country)?

Txflower profile image
Txflower in reply toLilypocket

US-Texas. Thanks for your suggestion.

Lilypocket profile image
Lilypocket in reply toTxflower

.... plus a ginger and lemon infusion. Ginger is marvellous for tummy upsets.

Auriculaire profile image
Auriculaire in reply toTxflower

I hated Pradaxa. Indigestion , no appetite, no interest in what was on my plate. For someone who lives in France and loves the great restaurants here -a disaster! I am now on Eliquis and have noticed some mild digestive issues but not too bad.

Txflower profile image
Txflower in reply toAuriculaire

Our son lives in Paris, and you certainly have the best food in the world. I have lingering nausea on Eliquis after seven weeks. So frustrating. Glad that you tolerating it.

jeanjeannie50 profile image
jeanjeannie50

What was wrong with taking Warfarin?

Bagrat profile image
Bagrat

Did you have problems staying in range with warfarin. I've swapped to apixaban but OH still on warfarin and totally ignores the fact and stays in range!! I found eating plenty of greens and having warfarin adjusted accordingly ironed out the blips from other dietary changes.

MarkS profile image
MarkS

That's a bit of a red herring about dietary restrictions on warfarin. The thing to do is have a fairly consistent intake of Vit K. I have a wildly inconsistent diet but I do have spinach and broccoli at least twice every 3 days and I also take a Vit K2 pill daily. INR testing is a positive for warfarin. At least you can check it's working properly, which you can't do with any of the NOACs (and the levels do vary a lot). How about getting a Coaguchek so you can do your own INR?

Thomas45 profile image
Thomas45

Give me Warfarin any day. It's proven, having been used medically since 1954. The only food restriction I know of is some aspect of cranberries which isn't a problem. I bought my own Coaguchek monitor and the arrhythmia nurse supplies testing strips and lancets free of charge. I can test myself when I want. I email the results to the nurse every six weeks or so.

I was put on Rivaroxaban once. It caused problems. I managed the excruciating pain for 12 days, before going back to Warfarin.

siouxbee19 profile image
siouxbee19 in reply toThomas45

Happy you're having so much success on Warfarin! I am for the most part, but am very interested in home monitoring, would be so much more convenient. My doctor wouldn't do it last year, but I had also experienced a DVT and PE diagnosed in May after having AFib w/RVR in March 2018, not to mention other serious health issues. Been one heck of a ride!

After determining I was high GI bleeding risk taking Eliquis after the AFib w/RVR, my cardiologist said just wait and watch. It wasn't until I was in the hospital later with the DVT/PE they put me on Eliquis and released me. I had to return to E/R next day with - you guessed it - GI bleeding! Was in hospital for two weeks.

Doctors all told me Warfarin is supposed to be higher risk for bleeding, but I am one of those rare birds that it's different. I'll be on it for life, which brings me to my question for you - Where did you purchase your Coaguchek monitor, did insurance cover it, and are you in the U.S.? Thanks for a reply. Be well!

Thomas45 profile image
Thomas45 in reply tosiouxbee19

Coaguchek monitors are made by Roche whose headquarters are in Indianapolis. Their USA website gives information about how much insurance will pay for it. I will send you the link soon . I am in the UK. I bought my own as our NHS does not cover it.

siouxbee19 profile image
siouxbee19 in reply toThomas45

Thank you so much for that info, I will definitely check into it!

Thomas45 profile image
Thomas45 in reply tosiouxbee19

The link is: diagnostics.roche.com/us/en...

It mentions insurance in Step 2, if you scroll down the page

siouxbee19 profile image
siouxbee19 in reply toThomas45

Thank you so much! Have a great day!

solarjdo69 profile image
solarjdo69

Sorry you have such complications to these thinners. I have a post somewhere on this siter that speaks to natural blood thinners I've been taking since tail end of 2015. No issues here and no side effects. As Popeye the Sailor said "I takes me chances."

There are many articles relative to Nattokinase which is my mainstay thinner on the internet. Not only does it thin the blood, but it will dissolve blood clots and is supported by trials at nih.gov ncbi.nlm.nih.gov/pmc/articl...

Excerpt: " 4 times more potent than plasmin in thrombus dissolution. At a concentration of 2836 FU, NK lysed 88% of thrombi within 6 hours,20 and NK exhibited significant prophylactic antithrombotic effects in vivo."

clinicaltrials.gov/ct2/show...

articles.mercola.com/sites/...

draxe.com/natto/

I also supplement the thinning with other thinners such as turmreric, vitamin "E", and Co-Q10.

Good luck to you on your journey towards better health.

Thomas45 profile image
Thomas45 in reply tosolarjdo69

The difficulty with natural anticoagulants is that you have no idea whether they're working or if you are overdosing. For example ginger is a natural anticoagulant, but how much do you need to eat daily to reduce the incidence of having a stroke?

Medical anticoagulants are to a standard grade. Ginger root is not. You may believe that because it's natural it can't hurt you but people can have allergies to natural plants.

lwm1198 profile image
lwm1198 in reply toThomas45

I agree - hard to regulate...turmeric led to nosebleeds...it was supposed to be good for inflamation, but I was already taking Elliquis, and even a small amount caused problems.

solarjdo69 profile image
solarjdo69

True. One doesn't absolutely know how thin the blood is, but I strongly suggest that one gets a feel for it. I do an occasional prick of the skin and see how long it takes to clot. Also, the potential danger of a serious issue since I am taking nattokinase which prevents and dissolves clots, makes me think the probability of a stroke or some such from clots is very low. This is why we take the thinners in the first place to prevent them / reduce their incidence. I also do not miss the side effects and the trips to get my INR readings. Here in America I have a co-pay with each visit which adds up if one is using Warfarin. The others seems like the side effects are so horrendous that I won't even consider them.

One has to determine for themselves what and how much works as all of our body chemistries are different.

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