I'm new here.....

[Judydiane]

I've never partipated in an online forum so i'll have to figure it out...anyway, my story is this: I had a terrifying afib episode about 8 years ago that landed me in the ER......i've had two cardioversions that were successful but temporary and finally I ended up with persistent afib and a lifetime on anticoagulants. I took warfarin for several years and then switched to xarelto.......i've lost a ton of hair and have developed leakly valves in some leg veins.....doctors insist these very upsetting results are not related to the drug.......has anyone experienced either of these problems??? is anyone taking one of the new anticoagulants having side effects?

[BobD Volunteer]

Hair loss is often attributed to warfarin. I have never suffered but do have brittle nails. I presume that you describe varicose veins in your legs which I doubt are anything to do with it. It happens to some people.

[Judydiane in reply to BobD]

Actually its not varicose veins...its a red blotchiness that began as tiny red dots and progressed over the years i've been on anti coagulants....vascular doc didn't have a "cause".....it can be hereditary but it doesn't run in my family........its not "lifethreatening" , butis very distressing.

[CDreamer]

Hi Judy and welcome, I found this forum a great source of help and support.

I agree with Bob, I don’t think there is any connection with the varicose vein problem and the DOACs. I developed varicose veins after pregnancy, they were treated and never had the problem again.

I was told to walk 2-3 miles a day to prevent return. Don’t always manage that every day these days though.

I’ve no problem with the DOACs after several years on them and happy to be protected against the stroke risk. I know a very small percentage of people have had side effects but I believe that is more with aching joints and muscles.

Best wishes

[Judydiane in reply to CDreamer]

Thank you forsharing your good experiences with the anti coagulant you're taking......might I inquire which one it is? Also, what does DOAC stand for?

Thank you.

[CaroleF in reply to Judydiane]

Apologies for butting in here ..... DOAC = Direct Oral Anti Coagulant. These are the newer anticoagulants (eg xarelto) ie the ones that don't need testing for INR as warfarin does. It's a term fairly recently introduced into common medical usage in the UK. Prior to that these drugs were known as NOACs (N for Non Vitamin K)

I take apixaban and apart from bruising easily (especially back of hands and forearms) have experienced no other side effects that I am aware of. However, I do recall people here reporting hair loss, though I can't remember which anticoagulant they were taking. You might try searching this Forum for 'hair loss' ( search box top right).

Again .... not too sure of my ground here but I think I remember reading somewhere - not here - about those tiny red pin-prick type spots you mention on the lower legs. I'll try to refresh my memory and post again when I've got something that might be useful*

* Edited to say ..... is what you are experiencing on your legs vasculitis? There do seem to be known hypersensitivity reactions to modern antiplatelet and anticoagulation drugs. See this article:

ncbi.nlm.nih.gov/pmc/articl...

[Judydiane in reply to CaroleF]

Thank you for taking time to reply.....the redness, fortunately, is not vasculitis........I actually have no symptoms of "vascular insufficiecy" which was the doctors diagnosis....just a redness that goes away when i sit with my ankles above my heart....right now its basically a cosmetic issue......I feel uncomfortable waeing a skirt!!

Thank you too for explaining NOAC.....that designation might have more common usage where you are.....i'm in California...USA.....

I meant to write DOAC.......thanks again for the definition.

[CDreamer in reply to Judydiane]

Hi Judy - I’m also now on Apixaban but I originally was on Pradaxa (Dabigatran). I did have some stomach issues with Pradaxa but I learned how to avoid those issues.

Warfarin is known for hair loss.

[cassie46 in reply to Judydiane]

I have the same rash but on the top of my feet, tiny little red spots, flat not raised that blend into each other. I take Xarelto and have been for 3 1/2 years. This rash has only appeared in the last 9 months. I have asked my GP and she did not know what it was, but was not worried, also asked my HF nurse who said she had seen it before and it may come and go. If I put my feet up it will more or less go. It is worse if I have been standing for a long time. Sorry I have no real answer for you, but as you say it is more comestic than anything else, it's not painful or itchy just there!!!

Cassie

[Judydiane in reply to cassie46]

Hi Cassie......I've shown it to my internist, cardiologist and a dermatologist....they all said it was "nothing" and unrelated to anti coagulants. My concern is how its progressed over the past 8 years...from one tiny dot, to areas that looked like red pepper was sprinkled on my ankles to how it is now. Two docs said it was "aging" (it started when I was 62), but I don't believe that......did your doctor say what it is?

[Buffafly]

I am on Rivaroxaban (Xarelto) and I have lost hair because it breaks easily but doesn't seem to be falling out. I changed to a shampoo for damaged hair and that seemed to help.

[Judydiane in reply to Buffafly]

The hair issues aren't listed on the very long list of side effects!!!.

[Judydiane in reply to Buffafly]

Mine looks fried.......like too much curling iron....but i haven't used any heat tools for years....i'm pretty sure its the drugs....i so wish i could stop taking them for six months to see what happens but i'm too afraid.

[daithelife]

Judydiane i opted to continue on warfarin as I had heard of these side effects. Otherwise no comment

[Judydiane in reply to daithelife]

You're saving lots of money!

[CDreamer in reply to Judydiane]

Judy we don’t pay for our meds, or pay a standard set fee for every prescription item, don’t know what it currently is but it is in the region of £10 so money is not an issue for us here

[Judydiane in reply to CDreamer]

Here in the US, a three month supply can run around $1200 dollars!!! Fortunately I have a Medicare (gov't health plan for people over 65) that subsidizes a part of the cost

[ebbea]

Hi Judydiane.

I've been taking Xarelto for well over a year now for an autoimmune disease and haven't noticed any hair loss apart from the normal shedding of hair we all tend to get in the warmer months. I may be lucky, but the only side effect I did get was dizziness when I was taking the dose in the mornings, but my haematologist suggested I take it before bedtime instead and this cured the problem. I had been on Warfarin since 2002.

[barneybin]

Hi Judy...,I too had a bad initial AF 7 years ago.and landed in A@E too.

Since that time i have had persistent AF of various degrees only treated with Bisoprolol

and amplodipine which keeps it rather stable.but now it seems permanent

In answer to your question..I was on rivaroxaban and i had both leg trouble and hair loss.

My legs developed a severe multicoloured rash and leaving the anti coagulant off the rash

went off...now i am on apixaban with no problems but as for hair loss I have found that a large spoonful of extra virgin olive oil in orange juice morning and evening has stopped the hair loss and for a 79 year old my hair is still around.

hoping this will help you wishing you all the very best....Mike

[Judydiane in reply to barneybin]

Thank you Mike.......I will definitely try the orange juice and olive oil. Do you know other people it worked for???

[barneybin]

Judy please see my post in reply to you,further to the information regarding the leg problem,I can't remember what it was called but the red blood and black type rash was diagnosed as something mainly only children get.

Blamed on the medication I was told to leave it off and I left off the rivaroxaban for a week

(brave fellow) the rash imeadiatly cleared up now I am on Apixaban..seems ok now

God bless....Mike

[Judydiane in reply to barneybin]

Hi Mike.......were you scared when you went off the rivaroxaban? Also...how long did you have the rash? Did it start out real tiny or did the whole thing appear all at once?

[barneybin in reply to Judydiane]

no judy..not scared i had new prescription of apixaban to hand but waited a week (not recommended) before i took it so things would clear up.

in that time the rash cleared up,my hair looked better but of course i had to then resume anti coagulant.

as for the rash..dont know how it started just suddenly noticed it when on holiday,it was on ankles nearly to knees.

the medics on holiday (at weymouth) after a blood test put it down to very low platelet readings and advised me to stop the rivaroxaban.

my doctor diagnosed the rash as something mainly affecting children sorry can't remember what it is called.

I do hope this has been a help to you I must say that so far no problem with Apixaban the AF is steady around 72 ppm and bp ok

oh well keep taking the pills...let me know how you are going on

best regards

mike

[JaneFinn]

Hi Judy, and welcome! This is my first online forum too

I've been on Xarelto (rivaroxaban) for exactly a year now. My hair has definitely been falling out significantly - it is now noticeably stringy and thinning - but im not sure if it happened as a result of the rivaroxaban. It didn't start immediately (or maybe it's that I didn't notice it til it really started getting thin). I initially thought it was the shock of the diagnosis and worry, rather than the meds.

I did suddenly have lots of thread veins appear on my legs and my eyes have been more veiny/bloodshot. (But thankfully nothing to worry about!)

My EP has requested a switch to Apixaban (purely because I've had a previous Gastric ulcer) so I'll let you know if that has any affect on my hair!

Best wishes x

[Judydiane in reply to JaneFinn]

I'll be very interested in knowing your experience with apixiban (here in US its sold as Eliquis)......its the only anti cogulant i haven't tried yet.......its a twice a day thing, yes?

[JaneFinn in reply to Judydiane]

Yes, that's right, it's the twice a day one. My GP doesn't like prescribing it because of the higher risk of people forgetting to take the second one.

I'll be happy to keep you posted I can't start it for another few days because I take my rivaroxaban at lunch time, so I'll have to wean myself gradually forward a few hours to taking it in the morning (or I'd be having to take one apixaban at 1.30am, in the middle of the night 😁)

Also, lots of people on here do take apixaban, so if you like, you could always put in a 'search' to see what's been written already about it, or ask a question of your own. xxx

[Judydiane]

Yes....i'd like to know how the apixiban works for you....hopefully all your hair will come back!!!!

As for my asking a question of the entire group, i'm afraid i don't know how. I need to study the site a bit and figure things out. So far i've only done "replies". I'm definitely not tech-savvy.....and my grandkids live too far away to be any help!!

Thanks for taking time to respond.