Coming off Ticagrelor after 2.5 years

[Lizbeth61]

Morning everyone. I have been on Ticagrelor, Aspirin, Atorvastatin since my coronary stent procedure in September 2020. Usually Ticagrelor is only prescribed for 1 year but my cardiologist at the time suggested i remain on it for 3 years for some further protection. Recently the bruising and swelling following any minor knock particularly on my legs has been horrific so even though I am not technically under the care of this cardiologist I sent him a picture of my bruised legs and he told me to stop Ticagrelor and continue with the other meds. Im just nervous about stopping completely. Should he maybe have just lowered the dose? I imagine it would have stopped anyway in September this year as that will be three years. Im healthy and well at the moment no chest pain on exertion so maybe worrying unnecessarily? Is anyone on long term anti platlet meds and if so why do they continue the anti platlets for some and not for others?

[Hidden]

Hello

I was on it for longer than the normal year I was on it nearly 2 years because I would have a heart attack so the year started a few months later so they would start the year again and then a few months later so the year started yet again and then months later a triple Bypass and yes they would start the year yet again !

After the Bypasses I did however come of it before the year was up a few months before some was because of bruising some was they felt I had been on it that long and it could have been why my breathing felt a little tight

They just told me to stop it no cutting down or weaning of

I was fine and I am sure if they felt you would not be fine no matter how bad the bruising they would have made you stay on it

You could but doubtful get a few side effects stopping it but if you did they may be positive one's like feeling better than you do now

Like you say you were coming of them anyway in September and they would have just stopped them like they are doing now

Trust them they are the experts and I am sure you will be fine

Let us know how you get on x

[Lizbeth61 in reply to Hidden]

Hello thank you for youe reply very helpful x

[Hidden in reply to Lizbeth61]

x

[Norton]

not much help really I’m only being prescribed ticagrelor for 6 months not a year post heart attack and stents as that is the policy in Glasgow research hospital

[Lizbeth61 in reply to Norton]

Hi thanks for your reply. Seems a very short time to be on anti platlets following your heart attack and stents but I guess every person and area they live are different

[MrsSuzuki]

I was put on ticagrelor after my heart attack but after about 6 days had horrendous black bruises and it was changed to clopidogrel. I took this for 1year and stopped it immediately, no weaning off it.

Lily

[Lizbeth61 in reply to MrsSuzuki]

hi Lily. I was on Clopidogrel at first but i came out in a rash all over so they changed to Ticagrelor the bruising is horrific. Embarrassing especially in the summer. Thanks for your reply seems most people come off it after a year

[Heather1957]

I had 2 stents fitted in October 2021, until then I had been taking Clopidogrel since 2017. After the stents my Clopidogrel was stopped and I was put on Ticagrelor & Aspirin supposedly for 12 months. I could not get on with Ticagrelor, as well as the bad bruising I found myself panting for breath for no reason, so after 6 months I called my GP and with her agreement I came off the Ticagrelor and aspirin and went back onto Clopidigrel.

Ticagrelor has had the worse side effects of any of my drugs.

I am surprised that you have been taken off all the blood thinners though although aspirin may be enough to do the trick in your case.

[Lizbeth61 in reply to Heather1957]

Thanks Heather. I was aware I would come off Ticagrelor at some point. Its usually a year but apparently it can be continued for some. Not sure why some people remain on anti platlets long term and some dont? As you say I am still on the aspirin and Atorvastatin so hopefully that will be protective enough

[Heather1957 in reply to Lizbeth61]

After my first angiogram in 2017 I had a mild stroke so was put on Clopidogrel and stayed on it even after my bypass in 2017. I haven't had a noticeable side effect with it and don't get any unusual bruising.

I was on aspirin when I had my stroke and I am sure that helped in making the stroke mild.

[Heartbear]

Hi Lizbeth,

I had a HA on 12 July 2020, which I was told was "major" - LAD 100% blocked. Remains unexplained, cardiologists at Barts in London say occasionally they get a case that they can't explain and mine id one of them. I've long moved on from it all and am back to my passion of running, albeit slower than I was but that doesn't mater. Hidden has been inspirational to me, as has my running group Run The Boroughs: instagram.com/runtheboroughs/

Initially I was on rivaroxaban and clopidorel. Both were dropped after 7 months once the clot (thrombus) in my LV had cleared and were replaced with Ticagrelor X 2 a day. Under instruction to stop it in July 2023. My GP has confirmed this. Thankfully I have not had any side effects of the standard cocktail since July 2020. Whilst I am grateful to be relieved from putting Ticagrelor into myself 2 x a day, I am slightly apprehensive whether I will have withdrawal symptoms or more concerning - am I at risk of another HA.

A few weeks ago I saw my GP to drain a bursa on my knee after I whacked it with a spectacular fall on a 5 mile run - I even got a "oohhhwwww" from some walkers present, and two came to help me up, making me feel even older than 54. I asked GP re dropping Ticagrelor. She looked at my notes and said that's fine, and to be honest after 2 and a half years on it, there's little evidence 'out there' as to the benefit of being on it or off it.

Have to say in a strange way, I'll miss it in my weekly pill box. It's kind of reassuring to have my pills in my box, and I love Fridays which is "Pill Box refill day", also for Hidden "Elliot clock winding day".

Hope this helps, and all the best - be positive

Graham

[Lizbeth61 in reply to Heartbear]

Hi Graham thanks so much for your reply. I too run albeit at a gentle pace but regularly and also walk every day too. Its good to know that you and others share the same apprehension re coming off something that makes us feel safe. Sorry to hear about your nasty fall I can imagine the state of your knee! I knocked my leg on the side of a table whilst on holiday last week and omg my whole leg swelled up and the bruise covered practically all of the top half of my left leg. I wont miss the bruises thats for sure but hopefully the aspirin and statins together with healthy eating and regular exercise will help prevent any further issues. Kind regards. Lizbeth

[Heartbear]

Hi Lizbeth, similar to you I run two or three times a week at 5k minimum, 7 or so when I feel like it. On days I don't run I walk in the evenings, usually my 4 mile route. I log stuff on Strave which is cool to see other friends.

My fall was a good one - slomo three steps than bang down on my LH side, thankfully on the grass verge, but somehow whacked my right knee. Amazing stuff came out of it when my GP stuck a needle in it. All good now and back to running (plodding) at 11:30/mile.

Best wishes, Graham

[Lizbeth61 in reply to Heartbear]

all sounds good Graham. My daughter tells me about Strava but im not competitive :-). Good luck and keep well 👍