Hi all, my dad suffers from Atrial fibrillation. Since he started taking Apixaban Eliquis 5mg daily in 2018 he has been loosing blood and his haemoglobin is always low. I'm worried now as his Haemoglobin is at 95 now and its causing other issues.
Has anyone experienced this and are you aware of any alternative blood thinners that do not cause bleeding?
Eliquis can causing bleeding from any site visible or non visible.The change to bleeding time and haemoglobin/ haemocrit levels can take some time to show up or can occur because of other health changes that also bump heads with taking a medication which worked for you at first too.
The protocol with GPs or Specialists usually recommends that if you begin to get low haemoglobin/ haemocrit results on repeated testing that they should stop or reduce Eliquis whilst also doing tests and scans to rule out other health causes for the low haem or bleeding issue.
If no other explanation is found for low Haemoglobin, or another cause occurs for the symptoms that does not fit with taking Apixaban as your drug option, then they are meant to consider using other for your anticoagulant drug.
You need to possibly arrange to go to an appointment with him as his advocate with either his Specialist or GP to help me him sort this out , if he is happy for you to give him this support, or get him to get an appointment to deal with it by himself with this advice in mind. I'm surprised that hadn't already considered making a change before now.
Your father shouldn't just stop taking the Apixaban without discussing it with a doctor though, just as none of us should just stop taking a medication until it's proven to be the cause of a problem.
It is also worth double checking all of the medications and supplements you father might be taking as well , as occasionally it can be that two drugs taken together or alongside certain over the counter supplements combine to cause the side effects. In those cases you can sometimes find that changing a different drug or stopping a supplement is the better option for treatment. Make sure at the appointment that you have the full list of medications and supplements your father uses to remind the doctor about so that they can check if a interaction is the cause.
You can also check his list of medications and supplt on a online drug check list to see if their are any interactions commonly listed.
There are various anticoagulant options if you get these side effects from Apixaban but they need to be considered against any other illnesses you father also has , or his previous response to other drugs and medications for other illnesses he may also need to take. A phone chat with his original or listed specialist may be better than just trying to organise a change with a GP in many situations.
But have hope , even if the Apixaban is not 100% responsible for your father's change in results , it is appropriate medically to have it stopped and changed for another option by the doctor at this point, and you should seek to request to do these tests and changes as soon as possible to help prevent the risk of further complications.
I hope things are sorted out soon for you and your father, I know it can cause the carer as much stress as the patient when a problem happens so take care , Bee
Thank you. Appreciate the suggestions.
Doctors have known for ages. They got him to do a colonoscopy a few years ago and later concluded that it must be apixaban and not to worry for now.
I'm going to the doctor but it's always helpful to have other opinions from this forum as doctors simply don't have time to discuss all the options and we often have to suggest/ask about particular options to see what they say.
I was just wondering if anyone has had luck with better drugs that may not cause bleeding.
If they realised it must be caused by the Apixaban and have done the tests already I'm really surprised that they just casually told you not to worry about it and chose not to change it there and then.In that case. You and your father are well within your rights to be more firm but polite at your appointment in pointing out that you are dissatisfied that they haven't changed the Apixaban already as they know it is responsible for the continuing symptoms and that that is the recommendation for treatment in these cases and requesting that the Apixaban is changed immediately for another option.
It really annoys me how nonchalant and slow they can be about solving these things when they know what they should be trying, I'm sure they wouldn't accept that sort of care if they were getting test results and symptoms like you father has been getting themselves.
Perhaps there are no alternatives. It's a double edged sword. If you stop apixaban, there is risk of stroke. We asked about reducing the dose but then it increases risk of stroke as he has other conditions as well.
So far alternatives to apixaban all seem to have risk of bleeding. I wish it was easier to know all the options.
There are various alternatives to Apixaban as an anticoagulant used for prevention. If you don't mind sharing the information, which other health conditions does your father have and which other medications does he take?
Knowing this would help people in replies because we can't really suggest a different anticoagulant that you could ask the doctor about if it's already known that that anticoagulant can't be taken with your father's other meds or illnesses.
It would make it a lot harder for you to push your cause if the doctor can just use your father's other needs as an excuse to not actively search for other options.
Sadly. It's not uncommon for a apathetic GP or less knowledgeable Specialist to use a patients other needs as an excuse not to make changes because they aren't up to date on new treatment options , or say there aren't other options when there are but they are just more expensive than the ones that are usually prescribed.
That's why it's good to educate yourself about care options for yourself with all of your conditions , so you can request things and you are able to say you know it's used or recommended when they say it isn't.
Certainly, if anyone can see alternatives, that would be amazing:
Clenil (beclometasone) 200 microgram/puff inhaler - twice daily
ferrous fumarate 210 mg tablet - 1 daily
Flecainide acetate 50mg- twice a day
Apixaban Eliquis 5 mg tablet - twice a day
Vitamin B12 and D
Furosemide 20mg on certain days to cope with edema
Does your father take Ferrous Fumarate. B12 and Vitamin D because it's been prescribed, or because of recurring deficiencies? Is the B12 a oral supplement or injected.
I ask because if you father suffers separately from a B12 induced Anaemia or Pernicious Anaemia this can also increase the risk of bleeding and bruising and in severe cases cause low haemoglobin , whether you are taking other medications or not, so it could also make the side effects worse on anticoagulants.
If he wasn't tested when this issue began it would also be worth him getting PA antibodies tested for Pernicious Anaemia, and having his B12 , Folate and Vitamin D levels checked if they have not been tested in the last six months.
I know my Anaemia , Vitamin D deficiency, and blood tests and bleeding / slow healing did not improve for years until I was being properly treated for Vitamin B12 Deficiency with injections and Folate Deficiency with infusions. Oral supplements aren't always effective for certain people with these deficiencies especially if the problem is functional or linked to poor stomach absorption.
Just another to option to rule out as an ongoing cause.
Steroids can also cause issues even as an inhalant in relation to bleeding risk but it can also affect things like iron , B12 and vitamin D levels with long term use.
Sometimes it's better to leave time between different medications that can both affect bleeding time or iron.
So. For example , you would choose to take the iron and vitamin D your father has been prescribed at least two hours after his medications or 4 hours after them to increase the chance of absorption and reduce interaction between the iron and other medicines. Taking a non acidic form of Vitamin C and a Folic Acid supplement at the same time as the Iron and Vitamin D and with food or a snack will also help increase his absorption of them both.
He would take his Vitamin B12 with another meal away from the iron and with no vitamin C or vitamin C rich foods to help improve absorption of that. Although if he has been Deficienct for many years in B12 despite oral supplements he should be on B12 injections at least three monthly for life anyway.
Some people , including myself, do not absorb ferrous iron easily and it can cause them stomach upset and constipation. Active iron supplements have a better absorption, store longer in the body and have less side effects but for a reason which is presumably economic are not available on the NHS as oral supplements. You could try purchasing Iron Bisglycinate ( active iron) for your father to use instead of ferrous iron. I use Solar Gentle Iron , if you are Deficienct, the dose equivalent to FF is two a day until the deficiency is treated then on for maintenance. If the iron and blood test levels are still low despite oral treatment patients should be offered iron infusions via IV every three months until it's treated , or in some cases they may need it for life , just as with B12 injections . The IV option is available of iron. Vitamin C and Folate on the NHS for more vulnerable patients to cover all of the bases.
Active Folate or Methylfolate is also simpler to absorb. You can get these online too. A large dose Vitamin D + K2 spray and a B12 spray are sublingual so absorbed through the mouth and available from health food shops and Amazon , BetterYou is the most recommended
You'd substitute them for tablet versions from the GP , or you could ask the GP to prescribe Vitamin D and B12 in liquid/ sublingual form as you father has still got the ongoing problem proved in part already by haemocrit blood tests he can receive them on prescription from the NHS.
Vitamin C can also be purchased in oral liquid form without acids.
He could take his inhalant at least two hours before or two hours after his anticoagulant to reduce it increasing the anticoagulant effect of the Apixaban.
It can be really hard to arrange the timings of medications to help prevent side effects or health complications, and you can feel like you are always having to take something but it's often worth it.
We get into a habit of taking all of our twice or three times daily medicines at exactly the same time because it's easier to organise but often that isn't the best way to take them and get the most out of them without complications occurring. Especially if you have malabsorption caused by illness or age.
The medications you father is on wouldn't prevent him trying another anticoagulant type but obviously the change of type would not necessarily mean a reduction in the problems , he can only be allowed to try one , or potentially try a lower stroke preventative dose of Apixaban.
Basically , your father needs chance to go through a bit of trial and error , and possibly receiving some initial infusions at the hospital to speed up the process to give him chance to improve his symptoms.
This can all be a bit complicated so if you want to ask any more questions please feel free to send me a private message via HU, take care , Bee
Thank you so much. So kind of you to take time to provide so much detail. I will definitely check out these options after discussing with my father. It also equips me better to discuss this with his doctor. Wishing you good health.
Hi
For. your information...
I was diagnosed as B12 deficiency in 2010.
I decided not to have a massive dose of B12 but rather (having tracked down the range of veg supplements) taking SOLGAR (gold top, brown bottle) 1000ug sublingual nugget (100 in bottle). I took 1 a day for 3 weeks and got up to 900. Fine because B12 is excreted safely.
I watched it decrease and decided then to have a level of 300-400.
Then I started 2 days 1 x nugget a day in each week.
Now that I am older research say higher to 800 level I now take a nugget under tongue around food 3-4 days a week.
Folate is fine.
Now I get tested once a year.
cherio JOY. 75. (NZ)
That's great.I did try nuggets and sublingual spray before getting loading doses of Vitamin B12 but I don't absorb and metabolise it , I have Pancreatic Enzyme Insufficiency as my cause of functional B12.
I had no option but injections after being left with B12 Deficiency with blood cell changes for many years which was over looked because they looked at me and assumed that I was underweight and malnourished because of an eating disorder (although I only discovered this when I got a full copy of my hospital notes back in 2020) , rather than the other way around in my case I could not put on weight and was malnourished no matter what I ate because I was not absorbing enough nutrients and I ate like a horse.
By the time I'd learnt more about dealing with my health and got more proactive and demanded further testing I'd been suffering with Neurological problems and could hardly walk or stand without falling , it also made my heart condition worse and causes me tremors and occasional slurred speech and Parkinsonism.
I'm also Folate Deficient without infusions, but I can take iron and vitamin D now and keep them in range and I finally put on weight to have a normal BMI and my blood cell shape has returned to normal.
In cases with Neurological involvement and more extreme versions of Anaemia they do need to use the injection and NICE recommendations are not to be tested beyond loading doses and remain on injections for Life.
Unfortunately many doctors do give people loading doses then test when the B12 level is obviously artificially high and stop people's injections assuming that it's " cured".
Doesn't work that way if you have a non diet/ medication related cause for B12 problems like PA in many cases, it will just keep dropping down again until you are back to square one.
Hence NICE recommendations that once a person has required Vitamin B12 injections they should stay on them.
Take care and I'm glad the nuggets work for you. Bee
Hi
Oh I see.
I am diagnosed with B12 Deficiency. As it is a blood test outside ones yearly blood test then it was not until a Cousin who has Lupis but not related, saw a tremor in my leg and asked me to go to Dr to be tested for Parkinsons.
Then the results. I went to Auckland Hospital to an Essential Tremor and Parkinsons Specialist. I had to draw inside a drawn shell and then walk straight line.
No to Parkinsons but Yes to Essential Tremor.
I have had trouble getting B12 Solgar so get it from Naturias NZ who gets from Switzerland. Its shot up in price to $60 bottle but looking on website and there's another provider for $33 a bottle - it used to be.
Gee there are all sorts of diagnosis. Does this mean you do not absorb any vitamins and need natural foods?
Take care JOY
Hi, thanks for suggesting non acidic form of Vitamin C supplement. He hasn't been taking Vitamin C supplements as its acidic and triggers his arthritis and causes a lot of pain. I wasn't aware a non acidic version was even available so this was very helpful.
I get a liquid version from Amazon , they can be quite expensive but the one I get is the best version at the cheaper price . It's Nutriloq Vitamin C. Be aware it lasts longer than it reports because companies always recommend taking far more than you require each day and absorb. So you only take 500 mg of any variety of Vitamin C , or 5 on a liquid pipette. Just adding it to the water you are using to take the other supplements.
PS : Has he also had testing it any scans on his liver or pancreas recently in the last twelve months. Including stool samples to check for inflammation and bacteria. I had testing for pancreatic insufficiency in the end after a big fight. I have this issue. Since then I've been on prescribe only Pancreatic Enzyme Treatment ( the super pricey stuff they sell in health stores is nothing like that required to work so don't be tempted by it. ) This has made a big difference along with my B12 injections and infusion for Folate.
My issues were confirmed with genetic testing on the NHS which had been organised to confirm my and my daughters Ehlers Danlos variant initially but they interview thoroughly and we finally got tested for the digestive problems too.
Only took me to age 50 to get a full diagnosis for my lifelong health problems, but at least I achieved a goal and my daughters have been tested , diagnosed and treated for the EDS and cardiac arrhythmias as they have begun to cause an issue , so they will never have to go through the health hell I did.
I don't think he has had any liver or pancreas scans so I will look into this. Like me he has been on plant based diet for many years and prior to that was vegetarian so I always thought his B12 deficiency was because of that for which he has 3 month injections.
Was it any abnormal blood tests that triggered them to do scans on your liver and pancreas?
I have been diagnosed with HSD so I'm very familiar with EDS and have to manage my condition daily. I had no idea for many years and it was a nightmare to understand all the issues I had and finally get a diagnosis. Managing EDS symptoms is key so in one way your full diagnosis will help your daughters going forward.
I was reading another post and saw someone asked about high BNP and connection with Covid. My dad had Covid recently but mostly recovered. However he had a very high BNP of over 2000 earlier this week. He seems to have persistent AF now as well. His Haemoglobin was always low and got even lower but I wonder if Covid is the reason for these changes.
It's all very confusing because his edema got worse and his frequency of afib increased. Normally when he gets afib his pulse is very high and he feels the palpitations. Anyway, he then got covid and in 3 weeks recovered from outward symptoms like fever, coughing etc. However his pulse was fluctuating regularly between 60 and 85 and I wonder if he has persistent AF now.
We got an echo done yesterday. Holter monitor check is next week so we will know more. However it appears flecanide might not be appropriate if he has persistent AF. He can't take betablockers due to arthritis and his pulse going very low. I have to push to see cardiologist next week to discuss what to do.
It’s always a clinical assessment as to which is a higher risk - stroke from Af or bleed risk. There are algorithms to help both Doctors and Patients decide which is the greatest risk called CHADSVaSC score and HASBLED - go onto the AFA website and you should find a link there so you can look it up yourself.
Apixaban is the anticoagulant which seems to have the lowest major bleed risk - if you visit the NICE website you will find the recommendations for doses of various anticoagulants under differing circumstances - then go armed with information to discuss with a cardiologist.
I take immune suppressants which many RA patients also take, many of which cause Anemia. Was your father by any chance taking immune suppressants or biologicals for RA? That would be a more likely suspect methinks.
How old is your Dad ? A reduced dosage for elderly is sometimes recommended. But consult with doctor.
May I suggest if possible call the doctor or his nurse now prior to his appt.
Thank you. Do you have a dedicated cardiologist/nurse you can call or did you mean calling the GP before hand?
He is in early 70s but has arthritis, asthma etc. For arthritis his medicine was stopped when he started apixaban. He also has edema on legs now.
He has been managing all this himself but its only now I am starting to understand all the complexities and seriousness of managing heart condition with other health conditions until now. It's really helpful to have this forum to see how others are managing their conditions.
Do you have a dedicated cardiologist/nurse you can call or did you mean calling the GP before hand?
I am in the US and have a cardiologist. Able to contact his nurse by message or telecon.
If the low Haemoglobin is the primary concern, GP would be best and he can contact cardiologist much easier than you probably. Depending on how long you have to wait for appt and if he is losing blood, would be best to contact soon .
If he was my father then I would take him back to the prescriber and seek advice and guidance and a change of medication. Good luck x
Thanks. Will be seeking medical advise but going to prescriber is not an option in uk. You get given a new doctor every time.
Must be your area, I see the same GP every time, but I always make my appointment with her though. Never had a bleeding issue on Apixaban. It only delays coagulation by 20 mins so think it must be some other issue personally. I'm not medically trained though. I'm over 80 and on 5mg twice a day as advised by the consultant.
All the best.
Roy
Hey I agree Apixaban is the most preferred drug and hence my dilemma. However there is information that also shows it hasn't worked for everyone. peoplespharmacy.com/article...
Also you are lucky if you can see the same GP every time.
According to Katie Thomas, writing in the New York Times (March 25, 2019):
I'd be very wary of believing stuff you read in the papers. They have to sensationalise stuff to sell copies.
Also the author of the Peoples Pharmacy has a vested interest in selling his book and promoting his podcasts and web site.
All the best.
Roy
Good to know, I wasn't aware. Thanks
I’ve been on apixaban since about 2017 and although I seem to bruise easily I was told by my EP that it is the kindest anticoagulant regarding brain and stomach
Hope your dad will soon be back to normal
I take 2 x 5mg twice a day and so far no prob. Hope it resolves itself
how old is your father? Did you know that at 80 doctors are supposed to bring people down to 2.5 twice a day? Some doctors even start people at 75 if they’re having issues I wish your father all the best.
Hi
Praza comes in 2 different strengths.. 110mg and 150mg both twicw a day.
If. one takes the capsucles twice a day it means a 24 hr dose is halved and therefore less risk of bleeding.
I was 70 and had a stroke when prescribed 110mg x twice a day.
Has your Dad got cancer? Research states that if a person has cancer he/she shouldn't be taking an anti-co.agulant.
Take care of him.
cherio JOY. 75. (NZ)
Thank you. No he doesnt have cancer. I'm not familiar with Praza. Is the drug Pradaxa (Dabigatran) by any chance?
You can also check your questions with a pharmacist (on the phone) before going to the doctor just to get another opinion. Pharmacists have to be up to date on combinations of medicines and are usually very helpful. It might help to do that before you get your 10 minutes with the doctor.
Just a thought. I hope it all goes well. Good to hear he's on anticoagulant.
76 years old with A F
apixaban and hematuria 
shortness of breath
3% Afib burden and proposed medication
