BRVO and AF: In 2017 at 72 I was... - Atrial Fibrillati...

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BRVO and AF

36 Replies

In 2017 at 72 I was diagnosed with a Branch retinal vein occlusion, high BP and my first episode of AF which was reverted by a potassium shot into my tummy in the A&E department at 3 am.

Since then, on 60mg Edoxaban, 2.5mg Bisoprolol fumerate, 20mg Lisinopril, and 4 weekly injections of Eylea into my eye. All has been ticking over fine.

In 2021 I was diagnosed with a very early breast cancer for which I had a lumpectomy, 4 (clear) lymph nodes taken, and put on aromatose inhibitor drugs (to prevent my body making oestrogen and help prevent the cancer recurring.)

Side effects have been weight gain, poor appetite, increased BP, raised cholesterol, hair loss, tiredness, brain fog, bone and joint pain to the extent I was climbing stairs one step at a time hanging on to the handrail. I am also treated for hypothyroidism.

I take a cocktail of drugs each day, and recently read that NSAIDS and aspirin, were used in a trial in 2014 to help prevent cancer recurrance in women who had used these medications. I am wondering, if anyone takes NSAIDS and/or aspirin instead of a blood thinner for AF (my brother in law in the US only takes 300 mg of aspirin a day after having a stroke about 15 years ago.) I am thinking, at my age(78 ) I could stop taking the Edoxaban, and the aromatose inhibitor and take the NSAIDS and aspirin instead. Of course, no-one will say, yes, go ahead, but has anyone heard of this, and has anyone stopped taking the blood thinners, as NSADS and aspirin can't be taken as well, and when I had a flare up of my sacroiliac joint recently, paracetamol, being the only thing I could take, was ineffective. It's quality of life now, not quantity!

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36 Replies
mjames1 profile image
mjames1

I was offered that alternative (aspirin instead of thinners) by a couple of ep's from top 10 cardiac hospitals in the US. That said, my understanding is that the European position is quite different -- either take a thinner or don't if you have afib, but don't take aspirin.

Your case is complex and above all of our pay-grades, so hopefully you will find the right answer in consultation with one or more trusted clinicians.

Jim

in reply tomjames1

Thank you for your reply. I wonder if the American treatment option is because the NOAC treatment is a lot more expensive than aspirin, is that a possibility? If it works as well, then there is no real benefit to be had by using drugs such as Edoxaban. Edoxaban costs £58.80 for a 28-tablet pack (60 mg or 30 mg) , which when compared to Aspirin is a no-brainer. obviously both have drawbacks, and are prescribed according to the need,

mjames1 profile image
mjames1 in reply to

Nothing to do with cost. And to clarify, DOAC's/thinners in the US, where indicated, are the preferred choice vs aspirin in the vast majority of cases. But you just can't proclaim that aspirin "never should be taken with afib" as an earlier poster did. There are situations where it might be an option. All the more reason to be under the care of a knowledgeable cardiologist or ep who can sort through things and come up with a plan of what's best for you as an individual.

Jim

pusillanimous profile image
pusillanimous in reply to

I would just like to say that my sister in the UK (NHS) - I live is South Africa, was admitted to hospital for a gall bladder operation. She had Afib, as do I and my other siblings - it's familial. They could not get her heart rate down, so they discharged her with a packet of Aspirin. She had a mild stroke which affected her memory badly, two months later. She was never readmitted for her op, and died several months later because a stone was dislodged from the gall bladder, lodged in a bile duct and became inoperable cancer - she was 78.

Ducky2003 profile image
Ducky2003 in reply topusillanimous

So sorry to read that........ especially worrying, as they've shelved a gallbladder op pending my having valve surgery first.☹️

in reply topusillanimous

That is very sad, I am so sorry for your loss.

BobD profile image
BobDVolunteer

Regardless of anything else NSAIDs promote AF and should never be taken if you have this. .

mjames1 profile image
mjames1 in reply toBobD

Bob, It's not as black and white as you make it out and besides being inaccurate, your statement could cause undo stress to someone with afib who was prescribed a NSAID by their doctor.

Perhaps phrasing it as "NSAID's are associated with increased incidence of afib and generally should not be used, unless indicated by your doctor" would be more responsible?

Below is a link that explains some uses of NSAID's within the afib universe. Also NSAID's are routinely prescribed for life after lAA closure devices like Watchman. There may cbe other legitimate uses as well. In my case, aspirin was suggested should I decide not to take a thinner. I understand this is a US position and not a UK position, but this is an international forum.

acc.org/Latest-in-Cardiolog...

Jim

HGates profile image
HGates in reply toBobD

Can you let me know the origin of this? Back in early 2020 when I was having a lot of rib pain I took the max dose of ibuprofen daily for nearly a month & I had not a single episode of AF during that time. I know NSAIDs are recommended against when on anticoagulants but have not read anything on it promoting AF??

BobD profile image
BobDVolunteer in reply toHGates

A study in Denmark some years ago showed that Ibuprofen in particular and NSIADs in general were a cause of AF.

mjames1 profile image
mjames1 in reply toBobD

The Danish study you're referring to is for Non Aspirin NSAID's.

Therefore nothing in that study to suggest that aspirin is a cause of atrial fibrillation.

Further, other studies have shown no relationship between aspirin and a higher incidence of afib.

Jim

BobD profile image
BobDVolunteer in reply tomjames1

Never said it was. I only ever talk about ibuprofen and NSAIDs. Aspirin is a whole different ball game .

mjames1 profile image
mjames1 in reply toBobD

Glad we're on the same page. The OP talked about aspirin and aspirin is a NSAID, so thought it best to clarify.

Jim

mjames1 profile image
mjames1 in reply toBobD

I also wonder, as did the studies authors, whether non-aspirin, NSAIDs are proarhythmic, or rather that the inflammation/pain that precipitated taking them, was the cause for a higher incidence of afib.

I do not take ibuprofen anymore, nor would I recommend anyone with afib to take it, however pain and inflammation have always been a trigger for me, at least until my ablation.

Jim

Thank you. Obviously a bit more research is on the books then!!

Actually, I don't think I have had any recurrance of that first episode, -155 pulse, but once you are in their grasp it seems, that's it! Should I have an appointment to see where I'm at? No one has ever said so, and the cardiologist I saw recently for BP-the aromatose inhibitors increase that so my meds have increased too- never even mentioned it.

HGates profile image
HGates

Are you saying you have had no AF since 2017?

in reply toHGates

I believe so. I did some research after my episode and discovered the importance of electrolytes- chloride, potassium, magnesium, sodium, which are required in tiny but specific amounts in a specific order so that the sinus rhythm-where the heartbeat originates -can fire at the right time creating the heartbeat! My potassium was very low, I had a shot into my tummy and I reverted on my own. Since then I have taken electrolytes every day-the cardiologist and GP know I take them and no reccurance! That's not to say it's the only thing, but when I asked the cardiologist, he agreed with the reasoning, but because it has to be seen in life, measuring the action is -at the moment-impossible. Much of our food is refined and many of the nutrients are lost, so unless one follows a diet which has the optimum amounts of minerals in it we can't be sure we get what the body needs.

HGates profile image
HGates in reply to

Your situation highlights the enormous complexity around AF & the particular difficulties when factoring in other health issues. One minute studies seem to show it doesn’t matter how much or how little AF you have, your stroke risk is chiefly linked to Chadsvasc score. The next, a study like NOAH appears that suggests short duration AF in the elderly, often caused by things like electrolyte imbalance, dehydration or a bout of pneumonia does not increase stroke risk. Obviously anticoagulants are more effective than aspirin in AF stroke prevention & they seem to have a similar bleeding risk so normally it’s a no-brainer to opt for the former. When factoring in what seems to be a one-off episode with known cause together with a need for chronic pain management it becomes so much more complicated. My mother had atrial fibrillation (permanent) & breast cancer. She was on warfarin throughout & took paracetamol & liquid morphine for pain management. Chronic pain is such a dreadful thing.

mjames1 profile image
mjames1 in reply toHGates

"The next, a study like NOAH appears that suggests short duration AF in the elderly, often caused by things like electrolyte imbalance, dehydration or a bout of pneumonia does not increase stroke risk."

------

Yes, many suggest afib duration as as a risk factor even though not yet included in the CHADS risk score. In fact, this is one of the premises of the PIP anticoagulation trial just starting in the US. Do you happen to have a link to the particular study you referenced? Thanks.

Jim

HGates profile image
HGates in reply tomjames1

nejm.org/doi/full/10.1056/N...

I quote John Mandrola in his Medscape review ‘’Do not be confused by the terminology ‘atrial high rate episodes’ - electrically speaking this is AF’’.

mjames1 profile image
mjames1 in reply toHGates

Thanks. This is an important study that potentially might be the beginning of the end of the debate whether subclinical as well as short episodes (mean 2.8 hours) of afib benefit from anti coagulation. According to this study, thinners do more harm than good in this particular group of afibbers. Mandrola mentions another trial coming up that will look at this issue from a different angle and then there is Rod Passman's multi-center PIP thinner trial that just started in the US, which will also try and answer whether daily thinners are necessary for shorter afib events. Mandrola was impressed enough (and he's not impressed easily by trials :) ) that he will use this data in his practice moving forward.

Jim

HGates profile image
HGates in reply tomjames1

Yes the fact he was so impressed was what struck me. I have started to find the more I read about AF, particularly examining the studies on which guidelines are based, instead of finding firm answers, the muddier the waters become. Dr Sanjay Gupta has a good video on YouTube called ‘Who’s the Daddy?’ re AF & strokes.

mjames1 profile image
mjames1 in reply toHGates

Absolutely. "Guidelines" are just that. They are a very general guide, not a clear cut direction as some make them out to be.

For example, patient history has to be taken into account as well as more current study data that may not have yet been incorporated into the guidelines.

This is where a good clinician comes in as well as doing your own homework.

Jim

bassets profile image
bassets in reply to

Hi this is interesting - what electrolytes do you take?

in reply tobassets

Electrolyte plus by Horbäch. I take one morning and evening.

bassets profile image
bassets in reply to

Thank you! :)

Swimsyroke profile image
Swimsyroke in reply to

I was interested in your comment about electrolytes being taken in minute quantities in a specific order. Could you direct me to where you read about this as I do take some electrolytes but not in any specific order Also I have recently cut down bisopropol to just 1.25 mg first thing and the brain fog has gone. I also take 30mg Edoxaban as my weight is under 9 stone

in reply toSwimsyroke

The body uses the electrolytes as it needs it-we don't have to do it! I just take the tablets and leave my body to do what it has to!! 😊 If you search 'sinus rhythm' and read how the heart actually creates the heartbeat. it's very interesting.

HGates profile image
HGates

perhaps have a look at this Medscape article & the associated NOAH trial

medscape.com/viewarticle/99...

Frances123 profile image
Frances123

Hi, i have had Afib for 18 years but am symptomatic. I also had breast cancer, diagnosed 2017. I had a lumpectomy and 3 clear nodes taken. No chemo, just radiotherapy and was on an aromatise inhibitor for 5 years. I did get a lot of side effects from the AI but I wouldn’t have stopped taking them for the 5 years prescribed. My BP was unaffected

I cannot tolerate NSAIDs or aspirin as I now have gastric problems due to NSAIDs circa 19/20 years ago. I wouldn’t take them now either because of their effect on Afib and of which I am sure contributed to my diagnosis. I am more than happy to continue my anticoagulant of the last 8 years with no ill effect.

I have not heard of the trial you mentioned and have researched BC in some depth over the years.

I am not medically trained and it would obviously be your choice but for me I would never have stopped the AI or Anticoagulant in favour of NSAIDs or aspirin. I only take Flecainide for my Afib. No beta blocker as I already have a low HR.

I do appreciate you wanting quality over quantity and hope you find a solution that you, your GP and BC nurse are happy with and keeps you well. Take care.

in reply toFrances123

Aspirin, Ibuprofen May Reduce Recurrence Risk for Hormone-Receptor-Positive Disease

PGE2 is part of the COX-2 pathway in the body and NSAIDs are COX-2 inhibitors. So the researchers theorized that stopping the production of PGE2 could ease inflammation and reduce the amount of aromatase in the body, which would mean less estrogen production.

This information is provided by Breastcancer.org.

Some other researchers were concerned about the results being applied to all NSAIDs when 81% of the women in the first study took aspirin. Aspirin inhibits both COX-1 and COX-2, so it may be that aspirin has different effects than other NSAIDs that only inhibit COX-2.

This information is provided by Breastcancer.org.

Two studies on NSAIDs and breast cancer suggest that these medicines may help reduce the risk of recurrence of hormone-receptor-positive breast cancer in **overweight and obese women **and may also reduce the risk of breast cancer spreading to the lymph nodes.

** BMI over 25.**

Inflammation contributes to the development of many diseases, including arthritis, atherosclerosis (hardening of the arteries), and cancer. So it makes sense that doctors would investigate if medicines that control inflammation, such as aspirin and other nonsteroidal anti-inflammatory drugs (NSAIDs), could affect breast cancer recurrence risk (breast cancer coming back).

There are many NSAIDs, including:

ibuprofen (brand names include: Advil, Motrin, Nuprin)

naproxen/naproxen sodium (brand names include: Naprosyn, Naprolan, Aleve, Anaprox)

ketoprofen (brand name: Orudis)

indomethacin (brand name: Indocin)

piroxicam (brand name: Feldene)

nabumetone (brand name: Relafen)

aspirin

Two studies on NSAIDs and breast cancer suggest that these medicines may help reduce the risk of recurrence of hormone-receptor-positive breast cancer in overweight and obese women and may also reduce the risk of breast cancer spreading to the lymph nodes.

Both studies were published in the August 2014 issue of the journal Cancer Research. Read the abstracts of:

“NSAID Use Reduces Breast Cancer Recurrence in Overweight and Obese Women: Role of Prostaglandin-Aromatase Interactions”

“Recent Prediagnostic Aspirin Use, Lymph Node Involvement, and 5-Year Mortality in Women with Stage I-III Breast Cancer: A Nationwide Population-Based Cohort Study.”

Overweight and obese women – defined as having a body mass index (BMI) over 25 – have a higher risk of being diagnosed with breast cancer compared to women at a healthy weight, especially after menopause. Being overweight also can increase the risk of recurrence. This higher risk is because fat cells make estrogen; extra fat cells mean more estrogen in the body and estrogen can make hormone-receptor-positive breast cancers develop and grow.

The enzyme aromatase turns the hormone androgen into estrogen. Some research has shown links between aromatase levels and inflammation in breast tissue. The inflammation is caused in part by prostaglandin E2 (PGE2), a hormone-like substance produced by the body. Besides causing inflammation, high levels of PGE2 also cause the body to make more aromatase, which could mean more estrogen in the body.

The researchers believe that this obesity-inflammation-aromatase cycle might be why obese postmenopausal women diagnosed with hormone-receptor-positive breast cancer don’t respond as well to aromatase inhibitors and have worse outcomes.

PGE2 is part of the COX-2 pathway in the body and NSAIDs are COX-2 inhibitors. So the researchers theorized that stopping the production of PGE2 could ease inflammation and reduce the amount of aromatase in the body, which would mean less estrogen production.

In the first study, researchers looked at the medical records of 440 obese postmenopausal women who had been diagnosed with hormone-receptor-positive breast cancer. All the women had a BMI over 30.

The researchers divided the women into two groups:

women who took NSAIDs daily (159 women; about 81% of these women took aspirin)

women who didn’t take NSAIDs (281 women)

The two groups of women were similar in terms of BMI, cancer characteristics, race, and type of surgery. The researchers looked to see how many of the women had a breast cancer recurrence and how long after the first diagnosis the recurrence happened.

After taking into account women who took statins or omega-3 fatty acid (both of which reduce inflammation), the researchers found that women who took NSAIDs daily had about a 50% lower risk of recurrence compared to women who didn’t take NSAIDs.

If women who took NSAIDs did have a recurrence, it happened about 2 years later than women who didn’t take NSAIDs.

In the second study, researchers looked at the medical and prescription records of 2,796 women in Ireland diagnosed with stage I-III breast cancer. It’s not clear how many cancers were hormone-receptor-positive and how many were hormone-receptor-negative.

The researchers found that women who were prescribed aspirin in the years just before they were diagnosed were less likely to have breast cancer cells in their lymph nodes than women who weren’t prescribed aspirin in the years before being diagnosed. This difference was statistically significant, which means it was likely because of the aspirin and not just due to chance.

Some other researchers were concerned about the results being applied to all NSAIDs when 81% of the women in the first study took aspirin. Aspirin inhibits both COX-1 and COX-2, so it may be that aspirin has different effects than other NSAIDs that only inhibit COX-2.

The first study also relied on the women remembering how frequently and which NSAIDs they took. It’s possible that some of the women may have misreported their NSAID use.

Regularly taking NSAIDs can cause side effects, including bleeding, stomach ulcers, liver and kidney damage, and other serious problems. This has to be

While these results are very encouraging, more research is needed before doctors know if NSAIDs can help treat breast cancer. Until those studies are done, doctors don’t advise regularly taking NSAIDs to reduce recurrence risk.

Stay tuned to Breastcancer.org for the latest news about research on new and better ways to treat breast cancer.

— Last updated on July 31, 2022, 11:30 PM

Frances123 profile image
Frances123 in reply to

Thank you. I’m guessing I missed this due to as I said not being able to take NSAIDs or aspirin so wasn’t actively looking for it. mskcc.org is another good source of help and information.

Auriculaire profile image
Auriculaire

From reading your post it seems to me that a lot of your poor health is due to the side effects of the AI - which are well documented. I read recently of new research which was questioning the blanket use of AIs after breast cancer- the results of the study showed them to be of less use than had previously been thought especially given the side effects. Perhaps you might look into this. One of the things that might help to prevent breast cancer recurrence is to have an adequate level of vit D . A large study the Kaiser Permanente Northern California's Pathways Study which has been tracking patients with breast cancer since 2006 has concluded that " in the context of supportive data from recent randomised trials and meta analyses our findings support the use of daily vitamin D supplementation to maintain sufficient vitamin D levels after breast cancer diagnosis" . Also there have been studies showing that vit D supplementation can help to offset the musculoskeletal side effects of AIs. So it would be a good idea to get your vit D level checked. What is considered adequate for preventing rickets- 50 nmol/l - is not considered adequate by studies done investigating cancer prevention.

SleeplessinMO profile image
SleeplessinMO

Hi. I live in the US & my 84 year old mother was just diagnosed with AFib. She’s on a farm & has worked pretty hard all her life, but she just lost her husband to cancer, and has had a couple other stressful events. My personal opinion is that she tends to have episodes of AFib when she isn’t hydrated enough. I, of course, am not a doctor, but I can understand your feelings about the blood thinners. She’s taking Eliquis. I understand about the quality of life situation though because I have severe arthritis & have had four joints replaced. Maybe ask your doctor if he could help you get off of them. You may be surprised & he might offer another solution. Another thing you could do is ask for a few pain pills every month, to get you through the rough pain days. My only worry with you stopping your blood thinner is that, not a shortened life, but a stroke that could leave you in a nursing facility for life. Not a great quality of life situation there either.

in reply toSleeplessinMO

Thanks-I think that's what is stopping me from stopping Edoxaban! My Dad had several strokes, and died in 1980, but that was before much treatment was offered then as he had what he called "good rich thick British blood"!! I will continue to explore, because, as the previous poster said the 'one size fits all' method is not working for the people concerned-it might allow the surgeons and doctors to sleep well at night, because they have done the right thing in following protocol, but the blanket approach needs to be more selective methinks! Also, of course, we are more informed these days and don't just accept what the medics say!

hatchback profile image
hatchback

I was diagnosed with AF in 2020 and given low dose aspirin along with a prescribed blood thinner. Been taking the same since and doing fine.

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