Hi all
It will be a year since my heart attack on 31 October. I was told by cardiologists who did my stent procedure that I need to take Ticagrelor for one year. I have asked the GP about staying on longer but he doesn't seem to think it's necessary. I'm worried about stopping it. Has anyone else stopped after the year and been fine?
Thanks
Hi Andie. I had to stop Ticagrelor after 9 months (allergic reaction to Ticagrelor)and just continued with Aspirin. It is now 14 months since heart attack and stenting and am still going.! I was recommended to take for 12 months then to just continue with aspirin. Research is ongoing so any changes to recommendations will be advised by NICE guidelines. Perhaps speak to the rehab team to talk about your concerns to them.
Here is link to NICE guidelines bnf.nice.org.uk/drug/ticagr...
Hope this helps Zena
Thanks Zena. I do feel strange symptoms from the drugs but not sure which drug is causing them. Have brief weird shortness of breath at times but not so much when exercising and cardiologist said that Ticagrelor is a harsh drug so the sooner I can stop taking it the better. They have ruled out my heart causing breathlessness as my EF is 69% and heart wall normal etc. My lungs sound fine etc. What symptoms did you develop from Ticagrelor if you don't mind me asking.?
Thanks
Andrea
Hi Andrea. I have a rare neurological condition- chronic Guillain Barre syndrome. Initially I had a massive nose bleed for over an hour! But then I had a GBS response which was really sudden and happened very fast. I was slightly breathless and rapid heart rate as the pins and needles traveled up the body and affected my chest area. Fortunately it subsided! However this is a very rare response and it’s because I already have the neurological condition anyway. Not sure this helps at all sorry about that. However at the same time as taking Ticagrelor I also had a problem with A number of other medications. I had developed a sensitivity/allergy to 5! Interestingly the worst one was Lansoprazole whilst it didn’t give me a GBS response it did give me other awful sensations. It was a nightmare getting to the bottom of each one and I did it by stopping and starting each one then changing them. It was under the supervision of my GP and one of the pharmacists. I think I first posted on here about allergies in April and it has taken until now to get to a position where I can cope with the drugs I am now taking and get back to increased activity . During which time I have felt really quite poorly as well as being scared concerned and frustrated!! But it’s worth the perseverance because I had to find out if it was drugs or another underlying cause.
I don’t mind you asking. I think it’s important to share information so that we can all learn from each other. Apologies for long post.
Take care. Zena
Thanks for that Zena, you really have been through the mill! I too am sensitive to meds and gave had weird symptoms which can't be proven that they are linked to meds the doctor says. I just know I want to be off them all eventually, although I will stick with aspirin. I guess my fear re coming off Ticagrelor is The possibility my 4 stents may not have been completely covered over by the artery walls leaving little bits exposed to potential clots but nobody can know that for sure.
I've never felt 'right' since my attack. That's not to say that I don't feel fitter and healthier but due to odd symptoms just never been right since. I believe this will change when I come off the drugs.
I know from previous posts that you also follow a plant based diet and here's hoping you too can come off the meds eventually.
Regards
Andrea
This was also discussed last week so thread might be of interest:-. healthunlocked.com/bhf/post...
Hi Andie, I was put on Ticagrelor in May 2014, I was told to stop taking it after 12 months and I got my doctor to query this with a cardiologist. The result was that I was to come off it, after a few months I read an article that gave new advice and that patients could be kept on it for 3years. I didn’t go back to try to get another prescription for this and it’s now 4 years since my last heart attack and am doing fine although I have had an ICD fitted in April because of my heart failure, but that’s another issue. I hope like me and thousands of others you will be fine. Take care, Nessa
Thanks Nessa, it's reassuring hearing real people who have stopped and had no issues.
Hi, stopped Ticagrelor after year and no side effects but one big plus was bye bye to the bruises.
Yes, I am looking forward to the bruises stopping!
Hello Andie, I was on Ticagrelor for one year after my heart attack after it was stopped I stayed on Aspirin, but, after a couple of months I became violently allergic to Aspirin. I am now on Clopidogrel which, with the help of Ranitidine and Peptac is tolerable, although, I still suffer some indigestion, otherwise I remain very well.
I can relate to the gastric issues. I've had camera down and they said I have gastritis, this can cause terrible chest pain but they assure me it's not related to heart. Sooner I stop tablets the better I think.
Hi Andie, I'm having exactly the same issues regarding gastric problems, I get terrible back and chest pain after taking my heart meds, when I was sent for the camera down I asked if it was a result of Ticagrelor or one of my other heart meds but the doctor wouldn't commit to an answer just said was a possibility, like you I can't wait to come off the meds
My husband stopped taking Ticagrelor one year after cardiac arrest and stents and has had no adverse side effects. He was told they give Ticagrelor to ensure the stents do not become clogged, almost like an anti rejection drug in a transplant situation.
Hi.I had a heart attack and emergency stent 16 months ago. I was only on Ticagrelor for 6 months I felt fine when I came off it. I didn't know it was usually taken for 12 months I'm wondering now why I was only given it for 6 months.
That's interesting. I think in some European countries they recommend 6 months. I think it depends on latest guidelines at that time. if I didn't have side effects I might think of staying on a bit longer but to be honest I would like to stop them as I am sure they are causing the weird breathlessness I get.
Hi
I had a stent fitted in March and am suffering from the bruises and breathlessness that comes with Ticagrelor. I am lucky enough to be a ward administrator on a Cardiology ward and in talking to my Cardiologists they have said all Dual Anti Platelet Therapy is given for a year although all stents are patented and covered within 6 months but the further 6 months is as a extra precaution. They have said I could change to Clopidogrel I am nearly 7 months in now so will persevere I think. I am struggling with huge garstric problems as well as feeling dizzy and weak and am now having to have an endoscopy. Holding to start feeling better soon.
Regards
Tracy
Hi Tracey
That is handy working where you work. I think a lot of my issues will melt away once I am off meds. Never felt the same since starting them although I know I am physically healthier than I have been in years. The gastric problems can be the worst. I don't even take Lanzoprazole as they did absolutely nothing for me. I agree with you that I would persevere with Ticagrelor even though I hate it because I believe it is superior to clopidogrel, which in a small subset of people doesn't work. Not long now, just hang on in there.
Regards
Andrea
Hi Andrea,
It is handy although I feel all o do is ask things as like you have said I haven’t felt the same since going on all these medications. Varying symptoms - itchy, hot skin, numbness along with the bruising and breathlessness. I am at my wits end with the gastro side effects with my GP not listening but just upping my Lansoprazole but I am still having awful chest pain and don’t know where to turn next!! Cardio day it’s 100% not cardiac chest pain.
Here’s to coming of Ticagrelor!!
Stay well and regards
Tracy
Yes, the chest pain can be horrendous. They did say the sooner I am off ticagrelor the better as it is a harsh drug. My chest pain is kind of like a deep seated burning ache accross the chest but not like acid reflux exactly. It tends to go away more with exercise but It's as if the nerves in my chest have been burned. I do wonder when stents are fitted whether these irritate some lining inside causing nerve pain, but it will be interesting to see if stopping Ticagrelor will eradicate the pain. I must admit over these past ten months the chest pains have been a huge source of worry but I too have been told it's not cardiac and it doesn't really get worse than it was months ago.
I will try to remember to post once I stop Ticagrelor to update on whether symptoms have gone away.
Take care of yourself.
Regards
Andrea
Hi Andrea.
I am only 7 months in and look forward to your post of what it’s like after you come off. I said the other day that I can’t wait to come off. I am being investigated for nerve pain and as you say it would be interesting to know if the stents irritate the nerve and like you I worry everyday with the chest pains. I am due to fly in 3 weeks time and am a little scared about getting on a plane because of the pains.
Look forward to seeing a post Ticagrelor post.
Take care and regards
Tracy
Hi Andie
I am dye to stop in November so I spoke to my cardiac nurse about this on Thursday as NICE guidelines say it can be continued for up to 3 years at reduced dose. Her comments continue only if you had another event in that first year, else stop. I also asked whether you stop without decreasing dose first i.e. weaning yourself off. Her statement was the Ticagrelor can be stopped straight away without decrease.
Hope this helps and good luck with your recovery
Same here, although I fear stopping them I think in some ways they are a horrible drug. Burning chest muscles, breathlessness, bruises. It will be interesting to see if these stop. I am guessing my symptoms are due to either Ticagrelor or atorvastatin. Only time will tell. We both stop in November, it's only 6 weeks away. I'm daunted but looking forward to it.
Yep Ticagrelor = bruising and breathlessness Atovastatin = aches and pains. BUT best to be here
Hi Andie
Yes I think that this is normal after 12 months, and what I did. The less medication the better as far as I'm concerned.
Take care
C
I stopped after 6 months. That being the specific period for me. I feel significantly better! Don’t run out of puff anymore, and cuts actually stop bleeding. All
Good!
Hi Andie,
Glad to hear all is going well.
I spoke to my cardiologist (Dr.Purcell - Freemen) after reading a post by someone on the forum who suggested that there was research to show continued use (beyond 12 months) still shows some benefit for some. He said that I could stay on them for a longer period ( I think up to two years; review in April) on a reduced dose (90 to 60mg) as I have no severe side effects - just mild stomach lining irritation controlled by ranitidine. I do get the bruises ( but only with the occasional bumps - so explained), but ‘happy’ to continue use for a slightly longer period - but will also be glad to get rid of them and the ranitidine eventually. The only other side effects I get are the odd ache and pain in hands /lower legs which seems to be artovastatin related but quite infrequent fortunately. Best wishes, David
Hi David
Nice to hear you are doing well. Didn't realise you too were under the care of the Freeman. I don't actually have a cardiologist as such. I have seen one at Cramlington since developing symptoms post angioplasty at freeman hospital but have been signed off and referred to GP. I can't wait to be off Ticagrelor but a little part of me thinks if I can put up with them a little longer I may have more protection. I am still undecided but am tending towards stopping them end of October.
Re the atorvastatin, I have had painful muscles, however these can last a few days and fade away and are bearable so I stick with them for now. As soon as my total cholesterol drops below 1.5 I will come off those too. Last bloods a few month back showed 1.6 (more due to diet/lifestyle than meds).
Keep up the good work.
Regards
Andrea
Yes, I am not sure how much more protection; I think they are small margins of benefit to prolonged use , which is why most people stop at twelve months. Wow your total cholesterol figures are impressive! . As you know, I am mostly plant based with a bit of fish, but cutting out most oil- 2.5 total cholesterol - but the ldl is the most important one apparently and that has stayed at 1.0- trig’s and the rest also well below/ above the recommended level - but need to slightly raise the hdl if I can. But all Good so far- running 3 miles and 15 miles cycling with some weights exercises together and no discomfort after initially losing a stone and a half (too much) , got back half a stone to target weight- so all going well. Glad to hear you are doing so well too- onwards and upwards...
Best wishes ,
David
Yes, I am not sure how much more protection; I think they are small margins of benefit to prolonged use , which is why most people stop at twelve months. Wow your total cholesterol figures are impressive! . As you know, I am mostly plant based with a bit of fish, but cutting out most oil- 2.5 total cholesterol - but the ldl is the most important one apparently and that has stayed at 1.0- trig’s and the rest also well below/ above the recommended level - but need to slightly raise the hdl if I can. But all Good so far- running 3 miles and 15 miles cycling with some weights exercises together and no discomfort after initially losing a stone and a half (too much) , got back half a stone to target weight- so all going well. Glad to hear you are doing so well too- onwards and upwards...
Best wishes ,
David
Hi just read your post.Andie. so how were you comming off Ticagular
Any clots or worries ..
Les
Hi Les
I would say I've been better off them. Don't feel the cold as much and gastric problems very slowly easing. No clots or any adverse effects so far. I do however follow a plant based diet and walk about 5 miles a day which accounts for my improving health. Meds are not healthy for you generally.
Thanks gor your update Andie.Good health to you
I stopped this drug on the 3rd of this month from what I have been told by 2 cardiologist is taking it after a year as no benefit at all iv been ok since stopping but early days how ever I have done a lot of research on this and I'm now happy that coming of the medication is the right move as it no longer is needed i hope this helps u
I saw my cardiologist a couple of weeks ago and she told me I have to take it for the rest of my life albeit at a lower dose. She said research had shown it was beneficial for me. She copied me in to the discharge letter to the GP explaining this.
I stopped 2 weeks ago the cardiologist told me after year there is no benefits that's applies to me all heart attacks are different I dont feel different off this drug only time will tell
I have been off it 3 weeks now after being on it for a year after having a heart attack & a stent and am fine.. I was really concerned, but no , all good here and still taking the aspirin once a day.
Dont stop any blood thinners I say, especially if you had bare metal stents. They will tissue over and cause blockage again. Okay may take several years but it will over tissue. Aspirin one a day is fine if your deluded into thinking your still fine. Its a ticking time bomb no one see. Why? I just had my next batch of stents for the reasons above, Its not fun.
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