Update on bleeding on anti coagulants

[waveylines]

Hello Everyone,

I really appreciated all the advice and feedback when I posted a while ago about my ongoing problems with bleeding on anticoagulants. Thankyou!

Ive tried two of the modern anti coagulant was considering warfarin as a last ditch effort. My EP wasnt able to offer any further advice as wasnt his terrain he said. However he did say I was low risk for a stroke.

My GP (for once one of the really expereinced ones rang me) suggested I tried halving the dose & taking 2.5 rather than 5. He explained people go onto that dose for operations. Frankly this seems a good idea and logical to me. He advised me against the op option and admitted that the pandemic would make it hard to monitor me properly on warfarin due to staff illness.

As the EP says he cant advise on anti coagulants was wondering if any of you clever lot can advise me on the 2.5 dose. Im not really clear what the anti coagulants really do - apart from the fact I bleed a lot on them & they reduce risk of strokes. Many thanks

[BobD Volunteer]

Contrary to the often used " blood thinners" monica, anticoagulants don't. What they do is slow down the clotting process. Warfarin and the newer drugs work on completely different parts of the clotting process but none of then actually cause bleeding.

What they do is slow it down. Any bleeding that does occur is usualy down to a structural weakness somewhere in the body but of course that is no comfort for those unfortunates who suffer bleeds. Many people when first on anticoagulants complain that their gums bleed but of course this is actually because of gum disease highlighted by the anticoagulant rather than caused by it.

I find it odd that neither your EP nor GP are able to advise you in this case and suspect an element of buck passing. If proper medical examination can't discover and sort out the cause of the bleeding then maybe investigate the possbility of a Watchman type device to reduce stroke risk.

[waveylines in reply to BobD]

Hello Bob,Thanks. Who is Monica? 🤣

I'm aware they don't thin the blood but slow the clotting process....thanks to the lovely information you gave me before. 😊

I have been investigated for all my bleeds and reasons found - "weaknesses" as you stated.

Its true I have inherited gum disease which was well managed for years before I went onto an anti coagulant. My dentist and myself have done all we can to control the bleeding since I went onto anti-coagulants...but on my last visit my grading was 8! Prior to an anti goagilant 0 or 1! So am clear the anticoagulants are making it impossible to control this condition & it is now rampant. I will loose my teeth in the end if I continue as presently treated.

I believe there is a balance to be had and given I'm deemed low risk for a stroke some middle ground needs to be found. So a lower dose makes sense.....maybe I dont need my clothing factor to be slowed quite as much as the effects on my body. What research has been done to show the variation of responses to anticoagulants? Is there a spectrum.....whereby the clotting factor is slowed down more than in others? What factors govern the variations? We are all individuals so I find it hard to believe the effects of anti coagulants are the same for all.

[waveylines in reply to BobD]

I found this piece if research:-pubmed.ncbi.nlm.nih.gov/309...

[BobD Volunteer]

Monica with a small m is slang for name where I come from. Sorry for confusion

Sadly if anticoagulants (other than warfarin which does depend on absorbtion ) did react in the way you suggest then there would be too much variation in protection. One or two of the DOACs do have a reduced dose for patients of light frame.

I know very well about gum problems which I developed thanks to a missplaced trust in NHS dentistry over 60+ years. I now have three monthly hygienist appointments which have been about holding things for the last 17 years. .

[KMRobbo in reply to BobD]

Is the spelling not "moniker"?

[BobD Volunteer in reply to KMRobbo]

whoops! Damned computers.

[waveylines]

🤣love the Monica! Yes its frustrating - mine was being kept well in place until the wretched anti coagulant came along.

Its very generic to say one dose suits all but a smaller frame. It doesn't seem to me that this has been looked at much except for an overall x amount prevents x amount of strokes.....rather than effects of drug on different bodies.

Obviously I don't want a stroke......dont want to loose my teeth either! NHS dentist very good done intensive treatment but nothing stops it. I actually think its being exacerbated as when off them it stops with in 24hrs. Amazing!

I'll go with GP advice. It'll be on record so he must feel quite confident to commit it to paper and script!

[Auriculaire in reply to waveylines]

It hasn't been looked into - not for any drugs. It has been discovered recently that there are genetically determined categories of metabolisers. Some people metabolise drugs more or less slowly than the average. It is at the average that one size fits all prescribing is aimed. If you are a slow metaboliser you will be overdosed on the standard dose. A fast metaboliser will be underdosed . Women are also often overdosed on certain meds because of their different physiology . I would follow your doc's advice and try a lower dose. If you are on Apixaban you could try lowering it to 7.5 mg to start with . There was a poster here who did this and took a half pill three times a day with his EP's blessing. Co enzyme Q 10 works well for bleeding gums.

[waveylines in reply to Auriculaire]

Thank u Auriculaire thats really useful. Yes doc is halving it for me & I'm currently splitting the tablet in half till I get them (broken ankle). And for the top tip on Q10 will get some. Thank u!!! I reacted very badly to beta blockers too....I do have hypothyroidism so not ideal that they prescribed them! But they made me very ill. Nessed with my thyroid hormone conversion. So maybe I also metabolise slowly too. Thanku very helpful.

Sorry just re read your post. If the 5mg per day works will try 3x s 2.5mg & see if that still works. Brilliant idea.

[Auriculaire in reply to waveylines]

I have actually taken 7.5 mg for some time now. The full dose of Apixaban gives me bloating and reflux and worsens my joint pain. I know there are people here who will tut tut but I think one has to take into consideration QOL . I have not noticed any change in how I bleed. When I started Apixaban I noticed that I bled a lot longer with cuts and scratches . Also they take longer to heal. This is still happening with the 7.5mg dose. I do go back to the full dose for a few days if I have an episode of afib. I too am hypothyroid and I could not tolerate Bisoprolol. I changed to Nebivolol which was better but I am very slowly weaning off that. I have restarted T3 at a minute dose after several years of T4 only after afib reared it's ugly head. I definitely feel better with the T3.

[Jajarunner]

I took 2.5 before and after my first ablation due to bleeding disorder I have. About four months after that another cardiologist said that dose was only for very small, light people and insisted I was back on the 5 dose. So it depends who you talk to! I was v low risk though.

[waveylines in reply to Jajarunner]

Yes I was told that too by a cardiologist who refused to explain or discuss any treatment....who put me on beta blockers despite a history of reacting badly to them & wouldn't let up....until I saw someone else who listened and sorted it. If ure getting lots of bleeding do you just stick to a blanket dose, resign yourself to an unpleasant life or consider modifying risk by lowering? I cant see any research that actually looks at this! Yet there seems to be plenty of us around struggling. Blanket treatments never work for all....

[Redmakesmehappy in reply to Jajarunner]

I take Eliquis 2.5 twice a day. I am in my 80’s and weigh less than 100 pounds. I cut my finger the other day and took longer than normal for the bleeding to stop but it did. Have no problem with bleeding elsewhere but do see some bruising if I hit myself hard.

[Rosemaryb1349]

I have had my bleeding gums under control for many years, despite Riveroxaban, by daily mouthwash of Peroxyl made by Colgate. Recommended by dentist way back when my bleeding gums nearly lost me all my teeth in my thirties.

[waveylines]

Thanks Rosemary. Am so glad it works for you. I was using Peroxyl then dentist moved me to corsodyl, nothing stops it except stopping the anti coag. My half dose is a last ditch attempt. I'm low risk so don't feel its worth the side effects. Lol....

[RoyMacDonald]

Teeth versus Brain. I'd choose Brain every time, but I did have a stroke caused by thinking I could get away without anticoagulants. Strokes are really life changing, don't think they aren't. People manage without teeth. Your choice, but make your dentist deal with the problem of your gums.

All the best.

Roy

[waveylines in reply to RoyMacDonald]

Thanx Roy & am really sorry to hear what happened to you and the effects the stroke on you must've been devastating. I hear you urging me on & am looking carefully at this....but there's a lot to weigh up. Its not just about teeth....wish it was....though please dont under estimate the impact of loosing them. Everyones circumstances are different & I know to you there is nothing complex in it but you don't know my situation.

[RoyMacDonald in reply to waveylines]

Thanks for your sympathy wavey, but there are people far worse off than me. I went from complete paralyse to full mobility in 10 days, however I've had to come to terms with the loss of a piece of my brain as it can never be recovered with all the functions and abilities it had learnt over 76 years of life. There is no way the medical profession can do pieces of brain transplants and even if they could there is no way to program that piece of brain.

My daughter has just started a new job tube feeding people for the NHS so even people who don't even have teeth can be catered for and I personally would exchange my teeth/throat for that life of my piece of brain that is still in my head but completely dead.

I was under the impression that a bleed was the worst thing that could happen to me (my Father died of a bleed in his brain) but I now think that death is better than another stroke. I know you will feel differently as we are the sum of our experiences and I left the stroke ward a very different person to the one who went in. The most positive thing I learnt from being on it is how unbelievably kind some people are.

I wish you well in your decisions. (Blenders are quite cheap 😉)

Roy

[waveylines in reply to RoyMacDonald]

🤣 Luckily have one sitting there all ready for action!! Oh my what a terrible time you have had......so pleased you have made such amazing progress. The frustration of part of your brain not working must be immense. I can quite believe anything is preferable to a stroke let alone another one. I think serious illness changes you immensely: for me, I like to believe, mostly for the better, you realise what/who is truly important & matters, the rest is just tinsel. Life is soooo precious and I am lucky to be here so just want to enjoy this amazing gift whilst I have it & not have it wrecked by the effects of a medicine.....