Tale of woe, sort of

[Harefieldfan]

I've been on ticagerol 90 and other meds (bisoprolol, aspirin, Losartan, etc) since my heart attack in May 2021, with second stent inserted via rotablation in Nov 2021. The surgeon said to continue the blood thinners for a year. I was originally treated at Luton and Dunstable hospital (L&D), and the lovely cardiac consultant said he'd bring me back around Oct 2022 to see how I was getting on and reassess my meds. A phone consult was arranged for Dec 1. But he never phoned. I tried the appointments line, his secretary and even PALS (patients' liaison service), left messages, etc but nobody ever replied or phoned me back. My GP says they usually stop one of the blood thinners after a year, But the L&D consultant had said in a letter that he thought I should go down to 60 mg in keeping with guidelines. My GP said she'd phone him; I said 'good luck with that'. So now I take my last Ticagerol tomorrow and that's that. Is it safe? Has anyone else stopped it? I'm happy not to take it, but I'm also scared. I can't believe that nobody ever replied to me -- not very good, is it? So I guess I'm without a cardiologist, which also scares me and I'm wondering what you wonderful people think.

Thanks.

[Hidden]

Comparing notes with others on here about medication is always not the best thing to do given we are all different with different medical history. So my suggestion is to go back to your GP to get her(? ) to make a decision about your ongoing medication needs with or without the input from the cardiologist as required. That's what GPs are there for. Even if it only results in a repeat prescription for more Ticagrelor (something you have already been taking for a year) , until something more definite can be decided with your cardiologist. Finally from what you have said I think it unlikely you have been discharged by your cardiologist since your case has not yet been properly closed out due to a lack of a close out consultation. But the GP should know that one way or another, since if you have been discharged, the discharge will have been back to the care of the GP.

[Harefieldfan in reply to Hidden]

No, I haven't been discharged as far as I know. And see my long reply further down -- I can't get Tig. at the moment cause the surgery. has blocked it.

[Maisie2014]

I think you need to speak to your cardiologist or at least in the interim. What did your discharge letter say. Mine said I had to take Ticagrelor 90mg for 12 months the 60 mg lifelong. Every so often my GP tries to take me off it and I refer him to the hospital discharge letter. I think it’s just different staff at the GP surgery trying to save money. Good to know they still review meds. Any way I’m still taking it.

[Giorgos1973]

good evening, I have no experience with these drugs, but my brother is taking it after two heart attacks, and four stents, the first time he took it for almost two years, because he didn't go to the doctor at all, when he finally did, the doctor scolded him and he stopped it , now since 14 months ago he had a heart attack again he is still taking it, you should definitely talk to the doctor maybe he will put you for blood clotting tests I hope it works out for you

[Yumz199725]

Ah that's so awful when they assure you they will get back to you and to leave you hanging on such an important issue aswell thats so bad! did you say you they would contact you by phone or letter??I was supposed here from my consultant well some one from his team at some point last week and no one phoned back i ain't even bothering they tried to phone me when I was in speecsavers bout 2 weeks ago and I said it wasn't a good time and Im not sure what they said but the gist of of it was I will call you next week I hope i heard right If not have to wait until 21st November 2023 🙈🙊🙉 although this will be in person thank goodness, don't see the point of these appointments over the phone 🙄

Sorry for rambling 😆.

Take care and hope someone gets back to you on whether it's safe to take blood thinner meds 😢❤️

[Harefieldfan in reply to Yumz199725]

Dear everyone who replied. Thanks!! Thing is, I've been left in limbo as it's impossible to get hold of the cardiologist. Two email messages from appointments desk to secretary. Two phone messages from me. One email to PALS. Nobody replies. The letter the cardiologist sent to my GP (last January!) suggested switching me to 60mg for 2 years as per the PEGASUS protocol (whatever that is). He said 'I will review her again in the autumn to reconfirm the plans for her Ticagrelor prolonged course.' When I spoke to my GP last week, she said they usually told patients to stop it after a year and just continue aspirin. She said she'd phone the cardiologist and meantime would I mind continuing on 90mg for a while. When I tried to reorder the medication, it was blocked by the surgery. I'll do what I'm told as regards meds but I just want someone who knows what they're talking about to tell me what to do. As for the GP, my surgery is pretty non-functioning now, one of those where the poor doctor has to deal with many, many patients per day. When she phoned me at 6.30pm, I could hear her baby crying in the background. So I'm not being difficult -- I'm just trying to get some instructions. Meantime, I take my last Tigracrelor tomorrow.

[Giorgos1973 in reply to Harefieldfan]

difficult decision, I forgot to mention that my father is ten years old, and he takes it for the rest of his life, two years ago he had an operation, and the surgeon told me that he should take it for two days before the operation, and I he said there is a risk of thrombosis, in the end everything went well, now I'm not a doctor but if I were in your position, I would continue until I find a doctor, always take a look, take the pill, for a few more days there is no problem, if you stop it,

[firstlight40]

NICE guidelines state ticagrelor 90 mg twice daily for a year after stents.However it also says 60mg twice daily for up to 3 more years for higher risk (like me). There's no current evidence of benefit after that time according to NICE. It sounds like you have been assessed as higher risk.

I would ask your GP why they are not following NICE guidelines for you.

PS Ticagrelor 60mg is quite hard for pharmacists to get, once prescribed I'd keep a month's supply spare.

[Harefieldfan in reply to firstlight40]

apparently they’ve approved 60. We shall see.

[Harefieldfan in reply to firstlight40]

I've got the 60 mg pack now. Don't think I'm higher risk. Just think the right hand doesn't know what the left hand is doing. Thanks to you and everyone who's replied. Have I said it before? This forum is wonderful!!

[firstlight40 in reply to Harefieldfan]

I'm higher risk because I have multi vessel chd and six stents although my HA was a nstemi with preserved heart function I guess they want to give me the best chance with long term dapt .

[Suzyh]

I was on the same meds I had mine stopped after 6 months as it did not agree with me and felt better. Wish I had stopped the bisorolol as well took it for 3 years and feel so much better Good luck anyway

[HomerJSimpson]

Hi, I had my HA in May 2021 also. I was told to be on Ticagrelor for 12 months then stop. I confirmed with my GP at this time and they agreed. However, that's my story and as people have said on here, each story is different. Don't know where you live in relation to the hospital but could you go to the cardiology dept and speak to them there? I know you shouldn't have to but you may get peace of mind.

[Ethel14]

I had a heart attack in 2014 and took Ticagrelor for 12 months after then stopped. I have just had another heart attack 19/10 22 back on 90mg Ticagrelor for 12months and then 60mg for 3years, it was explained to me that further research has shown it to be beneficial.

Hope this solves your problem.

[Qualipop]

It's normal to stop ticagrelor after a year as long as you are on aspirin. Mine was stopped after 6 months because of the effect on my stomach. That was after a HA ad 2 stents. No ill effects at all except my stomach got better.

[Harefieldfan]

Aah. I've just picked up my 60 mg prescription but with trepidation would prefer your solution.

[Heather1957]

I only managed 6 months of Ticagerol I just couldn't get on with it. My prescription said that after 12 months I was to stop taking it (and aspirin) and revert back to the Clopidogrel.

I spoke to my GP who confirmed it was okay to stop taking the Ticagerol after 6 months but I was taking Clopidogrel instead.

I think you need to either speak to your GP or the local Pharmacist just for advice.

Well done you for managing the full 12 months.

[Harefieldfan in reply to Heather1957]

I haven’t had any side-effects as far as I know but it’s so confusing when different professionals (GP and cardiologists) say different things. Anyway, I’ll start the 60 tomorrow and see what it does to me.

[Heather1957 in reply to Harefieldfan]

I had shortness of breath, it was awful it was hard to catch my breath sometimes and I was waking up with my mouth totally dry as it was obviously effecting me in my sleep.

This was one of the side effects listed and I had discussed it with the cardio nurse. Luckily I am on a cocktail of meds and Ticagerol has been the only one I have had a real problem with.

As I said just check it is okay to stop taking it, I was prescribed it after having 2 stents fitted by drilling last October and stopped taking it about May.